Thursday, January 15, 2015

This smile is what I want most for my daughter.  Katie happy, smiling, relaxed, interacting, signing.  It's not always possible but it is what I want for her.  Two weeks ago I visited old friends that I haven't seen in awhile.  They also have a son who is severely disabled.  Their son is blind and mostly deaf and probably functions about the same level as Katie mentally.  When I first met my friend, she was walking around the block, holding her son's hand.  He was three years old.  Now he's turning thirty this year. 

We talked about our kids and I asked if their son ever slept over night at their house.  They did try they said, awhile back but it didn't work.  Their son likes his home, his bed, his routine.  They see him regularly and he lives close by but it's not the same contact as living with someone.  It's bittersweet.  They love him but can't care for him.

That's me and Katie.  I know I can't take care of Katie.  She beats me up, pulls my hair, pinches, scratches, bites and headbutts me.  She requires constant attention and even with constant attention things go sideways. 

But I also know that her behaviors have gotten worse since she moved out and that her anxiety has gone up.  Her caregivers are wonderful people but it's not the same I don't think.  In my perfect world, the one inside my head, Katie would still live at home and she wouldn't beat me up.  I could teach her more sign language.  We could work on skills needed to care for herself like brushing her teeth and bathing herself.  She would eat at a table, with a fork, off a real plate, with her family.  I would tuck her into bed each night and she would not be in a wheelchair.  Sadly, that world doesn't exist.  I can't take care of my daughter and that still makes me sad. 

Katie and her big sister.

 Katie and her big brother.  Both he and Katie thought it was funny for her to push him around in her wheelchair.


  1. Sometimes there are just no words. You are asking for so little. xo