finding a voice

A few months ago, our very kind neighbor brought over paperwork for the Shriner's Hospital.  As a Shriner, he wanted to sponsor Henry to have treatment.  I was, of course, overwhelmed by such kindness and what the Shriner's do on a purely philanthropic basis is amazing.  They specialize in four very specific areas of treatment and Henry would qualify possibly for orthopedic services.

On Wednesday, the Shriner's had their first available clinic at the El Jebel Shrine in Denver.  I went early expecting to still pick up Parker and Thomas at 3.  I arrived at 1:15 and by that time, the hall was full of families and children.  No complaints but we were told it was odd that there were so many children there. 

There was a large group of older individuals, Shriners (with Fezs) and wives,  talking to the families and serving beverages and providing puzzles and other forms of entertainment.  

Because there was such a large group, we waited for an hour and a half.  Henry was the last person to be seen.  To his credit, he remained well-entertained by the Starfall app on my phone and playing tag and other simple games.  A Shriner offered to walk with Henry at the end.  It was very sweet because Henry always shuts down around strangers, but he allowed this man to walk with him as long as I remained in sight.  

Before I write the next part, I also need to mention that another Shriner approached me about halfway through our wait.  He asked me why we were there and I started to tell our story.  He stopped me and said, "It is very important for your child to know that they are not defective.  Often time when we are standing, we need to sit down after awhile.  We all have our limits and abilities."  I thought this was all very sweet and I actually started to cry.  I think I made this poor man rather uncomfortable. 

Henry was called back to see the doctor and as we came into the room, he said, "I see we have a little mild CP".  Then he said, "I don't think we'll be able to do anything for you" which is not really what you want to hear after waiting for an hour and a half.   This doctor asked me what I thought the Shriners could do to help Henry and I explained how I was hoping to see an orthopedist but more importantly to have the doctor's at Shriners do a work-up as well.  To this he said, "Well, obviously he has profound neurologic impairment which will probably continue for the rest of his life."  Excuse me?  I was so taken aback by this statement that I really didn't hear the remainder of his comments.

Now a summation of the doctor.  He was very old and sweating like I've never seen anyone sweat before.  He kept wiping his brow and was seemingly very uncomfortable.  I do remember him saying, "I'll ask what we can do for you" and returned to tell me that Henry was referred to Salt Lake City for treatment.  

We left the room to talk to another Shriner about treatment in Salt Lake City.  Soon after, the doctor came out of the room and announced he was not feeling well and needed to leave.  It was then I realized the poor man was probably having a major medical crisis. 

I left with Henry and allowed myself to cry only until we reached the freeway.  His words, unfortunately, stuck with me for a good day.  It flavored how I saw Henry interacting with others.  Was he seeing something that I just refused to see?  I kept asking myself this question.

No.  People exceed what is expected of them everyday as my mother reminded me.  

It's hard for me to write this next part because I just don't know where to go from the comment.  In one regard, I am terrified for what the future holds for Henry.  There will always be higher and higher expectations- that's a given.  I know I am amazed at his progress everyday.  I mean, just this week, Henry served me a hot dog from his new play grill and pretended to eat it when I gave it to him, asked for his backpack and put it on/took it off, said 20 new words.  These are BIG things.  Henry keeps making progress.  Yet... inevitably during the course of our lives, we meet those people who think they are doing us a favor by giving us a reality check for Henry.  

It's not helpful.  It just leaves me in a funk instead of helping me see all of the miraculous and wonderful little things that he learns every day.

I, however, would like to assert again and again that the Shriner's are by and large fantastic people.  What they do for families in need is utterly amazing and I would hate to think that this one entry in a blog would color anyone's opinion of all of their good work.  I just want to assert again and again with every treatment that we will accept the good and ignore any naysayers.  We will hear in a few weeks whether Henry will be seen at the Shriner's Hospital in Utah.

Henry above with his new grill for his upcoming birthday.  He was grilling animal crackers.  Very clever.  Later yesterday evening, we saw a double rainbow outside our front door.