Raymond's "Normal"

I just want to first say thank you to all who follow our blog, and second to apologize for my lack of posting.  Life has really been throwing some us curve balls the last few months, and Raymond has had a rough time recently.  His condition is very complicated, and continues to get more complicated, so his “normal” just changes. 

Raymond normally smiles and is relaxed, giggles and loves activities with family and friends.  Sometimes Raymond’s normal is slightly spastic, his muscles get tight and he can get uncomfortable.  So on those days we take him out of his wheelchair, stretch him and put him in his walker, just try to change things up.  Within the last two years he also started having seizures, so there is another item that has become one of Raymond’s “normal” issues.  I could keep explaining, but let’s just say that Raymond’s normal is different everyday.  I never truly know what kind of day Raymond will have, and have to just go with the flow when my expectations for the day are different than life’s reality.  Raymond even has really bad days that through reoccurrence have become part of his “normalcy” that we try hard to avoid.  For instance, last Friday he woke up smiling and we began our morning routine of meds, stretching, bathroom, etc.…..but after doing his morning “business” on the potty chair, he went into an episode of dysautonomia.  What is that you ask?  He very quickly got sheet white, ice cold, completely lethargic and clammy, basically flu like symptoms within minutes.  I immediately started our “normal” routine to get him out of this state and to get his GI (gastrointestinal) system working again.  His bouts with dysautonomia will last anywhere from one hour to a few hours.  Sometimes these episodes have lasted 5 or 6 hours with vomiting and land us in the ER. So on Friday I quickly began pulling air out of his stomach through his feeding tube, and a few other tricks…within 2 hours, we got him back to himself again and he was able to handle his morning feeding.  Once he started flashing that beautiful smile again, I knew for the most part he would be ok….so I called his nurse to say we were on the way to school.

I could not handle all of Raymond’s “normal” days without the Lord’s love and guidance.  Raymond’s normal routines are so varied, and to see Raymond go from smiling to very ill within minutes is very scary, but through love, gentleness, and determination, our smiling Raymond returns.  I will do anything for my boys, I love them unconditionally, just as the Lord loves us. 

I am so glad that Friday was a quick recovery for Raymond and that he was able to be at school.  This picture was taken as I got him to school that morning with his nurse, Kaylee, and his aide, DeAndre.  His class was making buttons for a classmate who has been in the hospital for over a month in ICU.  Our family has been praying for her healing and hoping she comes home soon.  Skylar's smiles are contagious like Raymond's.  In this picture we are all wearing buttons that say ...”Give a Smile for Skylar”.  So, will you join in Raymond and Skylar's beautiful way of spreading love by sharing a smile today?