I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Monday, April 8, 2013

The Gray Zone

So, here's the thing about Type 1 diabetes.  It may be a 24/7 emotionally hard, exhausting, unrelenting disease filled with painful site and dexcom changes, but to my scientific brain it is clear what to do.  We have a big study that demonstrated the lower the HgbA1c, the less likely certain complications are.  That's not to say that the body always follows those rules.  Certainly many people invest all their energies towards good blood sugar control and still end up with unfair complications.  But, I don't know that many would argue that blood sugar control is important and will likely lead to improved health.

So, when Jess was diagnosed it may have shattered my world, but at least I knew what I had to do.

This thing with Courtney is all about the gray zone.  And, I am so NOT ok with that.  I like data and proof and evidence.  And, there is none.  Two surgeons THINK she needs the surgery, but they don't have any data to back that up.  Unfortunately, the potential outcome of not having the surgery COULD be permanent numbness, weakness, or worse.  But, they don't KNOW.

Now her blood tests show her blood is just a bit too thin.  It COULD be nothing.  But, once again we just don't know.  It COULD also be a genetic condition that might increase her risk of bleeding.  And, even if it is a genetic condition and we identify it, it is unclear how to treat it.  We COULD give her a medical product that would decrease her risk of bleeding, but it also COULD cause her to form abnormal blood clots, which especially in the brain aren't a particular good thing.  And, we just don't know.

If she had prior surgery and had done well then we'd know if this abnormal lab value is anything to worry about.  But, of course my child decides her first surgery will be brain surgery rather than a tonsillectomy (violin playing.)

So, here we are in the gray zone.  At the end of the day, I just have to try to have faith that things will work out.  But, the problem is that so far my children seem to not do well with the statistic game.  And, I've seen far to many bad things happen in my career.

So, I am struggling.  I don't like living in the gray zone.

But, I don't have a choice.


  1. Not having information available sure makes this a lot harder. I'm sorry.

    Sending your whole crew a bunch of hugs and supporting vibes.

  2. Oh man. I hear you. I can totally do Diabetes, but not knowing facts and only seeing "COULD" would push me over the edge of sanity. Im so sorry you are in this situation. So, so, sorry.