Thursday, May 15, 2014

It ain't easy...

     I know there are some that may not be aware of many of the lyrics of now deceased rapper, Tupac Shakur given the image and reputation he had while alive.  However, he had songs that inspired many and seemed to have spoke about their lives during that time.  One of his songs with the same title of this post, "It Ain't Easy" seems so relevant to my life right now.  

     It ain't easy...proper grammar, it's not easy, being me!  That is the hard truth!  It is so hard sometimes to get out of bed to start a day that is not much different than the day before.  Sometimes we dread the unpredictable moments that disturb our days.  It may seem weird to actually want that.  My smartphone dings as reminders every few hours.  I know that my daughter has to have a certain medicine at a certain time.  Along with that, it alerts me every three hours that it is time to give her a bolus.  If you know her schedule, you know exactly what I'm doing at a certain time.

     It ain't easy, to get the day started when I have to work with her spastic muscles and at times a very strong case of asymmetrical tonic neck reflex (ATNR) while attempting to dress her.  How about on a cold winter morning and it takes over 7 minutes just to get a long sleeve shirt on her.  The tug of war comes again when putting her in her safety belts once in the vehicle.  You should see me standing there sometimes, rubbing her arm and singing to her just waiting and hoping she will relax soon.  The resistance is so strong.

     So, to all the doctors, teachers, annoying school administrators, therapists, whomever, understand it is NEVER intentional for us to be excessively late, it just happens that way.  It ain't easy raising a child with special needs!  It may appear controlled, if you only knew the half.    

     It ain't easy, but we do what we have to do because there is no other way!  Just have a little patience with us!

More to come...

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