Thursday, March 10, 2016

Why Are You Late?

This is the question I was asked when Soren and I arrived to pick up Soren's new leg braces at Shriners Hospital for Children this morning at 9:08.  8 minutes late to our appointment.

Now, before I answer that question, let me express that the Shriners Hospital for Children provides great services for kids.  I know I've mocked the mystery smell and posted pictures of creepy clown art that are both at Shriners.  But what I've seen most is their commitment to kids who need prosthetic limbs.  Since first going to Shriners at the end of last year, I've seen more kiddos with missing arms or legs than I've seen in my whole life.  And at Shriners they are cared for and given new limbs.  It's a terrific place.

Now, back to my story.  "Why are you late?" the woman in registration asked me in a rather rude, snippy tone.  I was so thrown by the question, I simply told her that I hit horrible traffic.  Which was true.  But it wasn't the real reason why I was late.

I was late because, before getting Soren out of bed, he had a MASSIVE seizure.  A real whomper, as we say.  After seizing, he peed all over.  And while trying to clean him all up, he pooped.  But this wasn't an easy poop.  Soren was working it.  It was struggling to get this out.  And when that's happening, all you can do is wait.  So we did.

Aaron and I then got him wiped and washed.  Aaron headed off to work and I fed Soren in bed via his G-tube (one of the best things we ever got Soren).  I then prepared things while waiting to see if there was any more "action."  There wasn't and the clock was ticking, so I got Soren dressed, loaded in his wheelchair, and we headed off.

We got into the car at 8:20.  20 minutes later than I wanted.  And then we hit some awful rush-hour traffic.  I usually go to Shriners later in the day, so I stupidly was not expecting this.  At least not AS MUCH as this.  The only thing that made it so that we were only 8 minutes late was using the Waze App.  But it was my first time using it and I was suspect.  Should I just take the route I always take?  Waze kept trying to get me off my usual course.  Finally (a bit too late), I starting following their directions.  And while some of the directions were a little harrowing (going down a steep hill and trying to cut across traffic on Beverly), we made it there.  

Now, there are only 4 handicap parking spaces at Shriners.  And, as I noted, there are many kids there with physical disabilities.   So I had to find an "odd" space to park my van so I could launch the ramp.  I did this, we went up the strange-smelling elevator, and we went to registration.  On their digital clock it said 9:08.  I felt this was a HUGE accomplishment considering what we'd been through that morning.

But clearly I was the only one.  "Why are you late?" she asked as I wheeled up my child who was flopped over in his chair because he was still recovering from his seizure.  I would hope that someone working at her job, a job where all the children have some sort of disability and where the parents are doing their best, would offer some compassion or concern.  "You're late.  Is your son okay?"  

Instead I felt like a kid being reprimanded at school.  I felt small.  I felt like I'd failed.  But I shouldn't have.  I was late because I was caring for my son.  I was late because I needed to make sure he was clean and fed.  I was late because we needed to arrive safely.  

"Why are you late?"  I was late because I was being a parent.



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