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.
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