Would you like some comfort with that chaos?

Living and caring for a child with many disabilities is like living in the middle of a busy intersection blindfolded.  You don't know if taking some steps towards the side will be safe or result in a thwarting strike knocking you off your feet.  Most people sleep at night, wake up in the morning, resume whatever it is their life requires.  Some people know, for instance, that they will shower by 6:30 am, and be to work by 8:00am, have their lunch promptly at noon and leave their place of work at 5:00PM.  They know that they will proceed home, have dinner, watch TV and go to bed.  Throw in some kid stuff, or adult stuff here and there.  Whatever. But with my Daniel I go to sleep not knowing if I will be up again three or four times in the night.  I wake up and have to assess if he is well enough to go to school, and I have to wait to make sure the nurse gets here in time for the bus.  Sometimes the days plans change on a dime, and next thing I know I'm in an ambulance rushing off to one of many hospitals that we use.

 

Does the brain function well in chaos. No, not really.  I think as women, and as Mothers and as people we strive for the comfort of knowing where and when we will rest our butts on our sofa.  Mothers are often talking about the balance.  Finding the "balance" in their lives of work, kids, etc.  Balance is good.  It keeps us level, and when we go off balance we go wacky.  We get manic or we get depressed, overwhelmed and exhausted. 

 

Every once in a blue moon I find a few minutes to sit and think, like now, and I feel like I am roaming through a long hallway of doors, and those doors all have stuff to do inside them, but I don't know which one to open or go into.  Its as if I'm wandering like a lost soul, and then suddenly I am back with Daniel in his room doing "special needs Mother stuff".

 

Tuesday night, May 13, 2014 Daniel was doing well, and nurse Marques was getting him ready for the tub.  Suddenly his temp starts going up up up. by 8:00pm he was 103.  This is the kind of stuff that unravels my warped need for comfort, and balance. Where was I when Daniel had this freak episode which included a significant drop in his oxygen? I was next door at my neighbors house. She lost her 54 year old son, completely unexpectedly and John and were paying our respects and drinking tea. After that,  I thought it would be a normal night at home.  By 10:00pm I was sitting in a crowded emergency room waiting for Daniel to be seen, watching him feverish and breathing laboriously..

 

Its like that.  Unpredictable.  Unplannable.  Chaotic.  Raising Daniel Hasselberger, you see, is a lesson in walking on a balance beam.  With unlimited amounts  of wobbling and bobbling. 

There is very little time in my life for peace and relaxation and friendships.  Having more of that may restore balance in a life that has been falling off balance for so long.

 

I am, to many, a wanderer.  Following the tracks of a terrible condition that afflicted my child.  And quite quite literally I never know which way they will turn.