Ready to talk, not ready to know

So I’m just sitting here today, July 18th, publishing the blogs I’ve been sitting on for the past month.  I didn’t feel ready to talk publicly again, but I composed some blogs to get it out.  There was so much going on – concerns with Harry’s neck strength, our new PT (which was a really rough experience), and what I’m about to discuss – the pending issue of genetic testing.  I just felt like I needed some time to myself, but I feel ready to talk again.

This doesn’t make me any more ready to know Harry’s diagnosis.  CHOP just called me now to let me know that his genetic testing (which costs over 10k) was approved by our insurance and we are ready to move forward.  We will be doing an extensive myopathy panel that will take a couple of months to complete.  I am not ready for this.  My mind is reeling in all of the possibilities – it’s not a myopathy, it’s a bad one, it’s a good one, etc.  The worst part is that after this testing is completed, we may really KNOW what’s wrong.  Let me explain: what Harry has is not like much else, knowing doesn’t help us treat him.  We could actually go on for a very long time in this bliss of not having a label and treat him just as well.  I feel like after this he’ll have a stamp on his forehead determining his entire future.  I don’t want to know.  NONE of me wants to know, not even a tiny piece of me right now.  I joked from the beginning that I needed to know which support group I was to attend, and right now I’d rather go to all of them.

Deep breaths.

So how’s the man?  Well, we’ve all but stopped using his vest as it’s thermonuclear hot, but the braces are amazing and offering him a stable base to walk.  He’s walking barely holding one hand right now on flat surfaces, and falling is fewer and far between.  The terrible twos are starting a bit, but all in all he’s a happy go lucky guy.  We just got back from a trip to Vermont for a friend’s wedding and to visit some family, followed by an awesome trip to Sesame Place and Harry’s first movie in a theater!  I’m trying to get as much as I can out of the summer as I close in on the last year before I get my RN.  This year will be challenging as I’m going to be juggling school, work, and full time therapy for the man, among other stuff.  We’ll get through it.


2 thoughts on “Ready to talk, not ready to know

  1. You are strong, Gloria. You and Josh are Harry’s parents for a reason. He is a precious boy and certainly has lots of love and light coming his way from all of us who love you all.

  2. I remember when we had to take our eldest in to find out what was going on with him mentally. I was so scared and anxious. It’s like, once you know what is going on there is possibly something that can be done to help. However, once you know what’s going on, that becomes the all encompassing label, forever and always. Harry is such a lucky guy to have you guys there for him with lots of love and support. GO HARRY!!!

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