Exhaustion and Vigilance


I am so tired.  I have scaled back my life so much to embrace this path.  And yet I am tired.   Caregiving.  Complex needs.  Parenting.  All that within and part of the rest of my life.  A ball of tangled up strings, all the same color because they are MY strings, but each string is a different and distinct entry on my list of favorites.

Mom radar. My internal nighttime radar/emergency alert system is so hypersensitive.  Of course it is. She has become so sick and required more care than I could imagine.  She has pulled tubes/needles/etc. out of her body that were supposed to stay there.  I remember the time she got up in the a.m., walked into the kitchen with something in her hand and said, “Here Mom” as though she were handing me a crayon.  It was her g-tube. How long had it been out?? Calmly rush (?) to try to get it back in her belly before her body healed the opening shut, which can happen within an hour or so.  Failure means surgery.

Hyper vigilance has been useful in averting disastrous events.  We’ve avoided surgery at least twice, and many other serious events as well.  I try to relax and I often do.  But I am always paying attention and always training her.  I’m in charge. I guess that’s it.  I do not want any unnecessary trauma or suffering in her life or mine if it can be avoided.

En (my daughter) has become quite a cuddler over the years and she loves to have a hand on my face while we, no she, sleeps.  So I am still training her to stay in her own room at night.  Radar means I hear when she gets up.  Potty stop, drink of water.  The doors open and close and I am awake enough to steer her back to her own room if need be.  After five nights of correctly steering herself back to her own room, I relax even more.  I sleep through all the sounds.  I awaken at 4 a.m. and find her knee in my side.  Augh. Warm though she is, I cannot be her body pillow.

Her hands on my face is one of the best things I have ever felt.  It feels like love and gentleness and sweetness and trust.  I love it.  But I cannot love it when I need to sleep because the guaranteed result is lack thereof.  So back to your own bed little girl. *sigh* lots of work this path with special needs.

I can hardly wait for her to get home from school and put her hands on my face. Meanwhile, I need a nap.

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