Mommy Vs. Clonidine

Clonidine, a blessing and a curse for my family.  For now, I will keep this brief because first of all I am tired, and second, Riley is home.

It has been a very long week which began last weekend when Riley did not feel well and stayed up 48 hours straight.  Clearly, the clonidine does not always succeed at dropping his blood pressure and helping him to fall asleep.  When Riley is wakeful, the rest of us stay awake with him.  I did have a plan to post about that 48 hours.  I have not gotten to it... because I was up 48 hours straight with Riley, it can become an emotional subject because the toll sleep deprivation has taken on my family, and because each time I go through this... I really do not like myself very much and likely it all should not be shared.

Though, as you recall I have a mission and it is to share a little of what it means to live this special needs life.  Some should be kept and I am not writing a full-disclosure blog.  However, I may verge on subjects that could get me in hot water such as medication use etc.  I live on the edge just by circumstance alone.  Once you are special needs... you are open to judgment.

Alright, I must get through my post and attempt to wake Riley.

We were up a lot and I think of it as taking from "the bank of Riley" and it would appear "the bank of Mommy" too.  Tuesday Riley went into recovery mode and went into a very deep sleep at school.  Naturally they were concerned about this uncharacteristic behavior and asked me to collect him.  Unfortunately, Riley was at school in San Carlos about 15 miles north of home.  I happened to be 15 miles south of home in a doctors waiting room while my lucky mom was suffering through a colonoscopy.  "Please wait."  That was hard as procedure dictates that uncharacteristic behavior gets him sent back to his family.  Shall we call Dad.  Dad is working and happens to be driving a tiny run-down Toyota Camry.  Riley and his chair need his special seat and space for a wheelchair as well.  Of course, I did not have that either as I had taken my mother's car for this event.

In the end, I actually pressured the very lovely doctor Schwartz as soon as I could to please talk to me now so I could gather up my mom and run out the hospital doors.  Yep, great supportive daughter I am.  But Riley's needs come first.  Always.  That is just how our life is.  Riley is first.  Always!  Rush doctor through my lecture, get mom out the door, race her home, race to my house and swap cars, race to Riley's school.  Take him home, feed him and watch him wake up and be ready to take on the day.  Gee wonder where my time goes?

On to this morning.  I am still feeling sleep deprived.  You would think after all these years I could handle it but the reality is that over time I have just kept taking from my "bank" without opportunity to replace it.  First think I do each morning is prepare Riley's morning drugs.  Morning drugs are on the red side of the pill organizer.  The RED side.  I know this.  First thing this morning... I prepared a little silicone bowl full of applesauce, opened up the blue side of the pill organizer and located Friday drugs, ground them in the mortar and served them with the applesauce to Riley.  Well done Mommy.  First order of the day taken care of. 

Off Riley goes to school.  An hour later the phone rings.  Riley will not wake up, please come and get him.  Day over for Mommy. 

Obviously I fit this post in anyway because he is still sleeping.  Hey, we all need some sleep and it's gonna be a rough night since HE ALREADY HAD HIS CLONIDINE!

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We are all special... today I'm extra special... Stacie Wiesenbaugh