When you have a child who is medically fragile and have gone through stuff that no mother should ever have to see; you are often told that your panic attacks are due to PTSD (post-traumatic stress disorder) from doctors, therapists, family members, and friends.
Recently I started seeing a therapist and once again I was told that I have PTSD. As I sat there listening to him tell me what he thought I was going through; I stopped him and told him something that rocked my on world “there is no post in my trauma.”
This is truer then I like to admit. Yes there horrors from the past with Mighty Z that wake me up in the middle of the night in cold sweats feeling shaky as my heart pounds in my chest, yes there are noises and smells that bring me back to a traumatic time where I almost lost her.
However, what is harder to deal with is not really the past trauma but the current any moment trauma that has yet to happen, but surely will happen any given moment. It is hard to stay in the present and to not give into the trauma that is lurking around the next corner waiting to pop out at you any moment.
I will say that I have done a pretty good job in masking my fears of not really what the future holds but more what is about to come. I think we as mothers of medically fragile children actually have chronic-traumatic stress disorder (CTSD) and not PTSD. Like our children who live with chronic disorders and illnesses it is all the time, no break, no days off, follows you around ready to pounce on you trauma.
So what do you do with CTSD? I am certainly not the one to tell you the best way to handle it, however we can look at our children who deal with being chronically ill and see how they deal with it. Mighty Z just pushes on through although I am not as brave, tough, or as resilient I can take my cues from her. Mighty Z looks at everything with laughter and humor so I need to do the same. I need to make time for myself so that my whole world isn’t centered on her disease and what is around the corner. I have spent 15 years trying to keep her alive and trying to give her a life worth living when I should have carved out a time for myself as well.
I bought into the lie that having a child who is medically fragile is “a life for a life”, but I am starting to see it doesn’t have to be. I think what we really need is caregiver fatigue management and I am trying to figure out what that is and how I can carve that into my day. I am sure I will always have CTSD, but I don’t think that CTSD will have me much longer.01