So then what?

This is the part where my wife and I get all emotional about our baby having an incurable, unpredictable condition.  We came to terms with the situation and let me tell you, it wasn't easy.  Our son was none-the-wiser; a happy and sweet little guy, and here we are all teary-eyed thinking of his future.  It was not easy to deal with the realization of things and it took us a good amount of time to "get over it."  Or at least get over it as much as we could.
Over the next few weeks, the rest of his hair came out.  His eyelashes and eyebrows had slowly been leaving this entire time, too.  So he was completely bald and shiny.  I always wondered how some bald guys have shiny heads....it's apparently natural.  Who knew? 

Everyone started suggesting everything left and right to us.

Suggestion:  Take him to this doctor in Florida for a billion or so dollars to use a hyperbaric oxygen chamber.
Reaction:  What?  No!

Suggestion:  Try a gluten-free diet like they do with autistic kids.
Reaction:  What?  No!  His pedi said he had no actual signs of gluten intolerance.  Why would we bother doing that?

Suggestion:  Get him a hairpiece.
Reaction: What?  No!  (abrupt laughter)

Suggestion: Why not try steroid injections?
Reaction:  Because I will kill you.

It's not that these people had bad intentions, they just obviously did not understand what all of this meant.  He isn't sick.  My son isn't sick.  He has an incurable disease that makes him have no hair.  That is all.  How come no one understood or accepted it? 

For a long while, it was just a lot of ups and downs.  We were sad about it.  We were upset about it.  We shed a tear or two over it.  We didn't like how people constantly talked about it, as if there was nothing more to our child.
I know he is healthy.  I know everyone thinks and says to us, "at least he is a boy."  [This totally pisses me off, by the way.]  I know it could be worse.
But if you were in my shoes, you would feel similar.  I think this bothered me, too.  Unsolicited advice as to how we should feel.  Until you are in the same position, you have no right to speak about how we should feel. 
A lot of people who knew Cole would say something about his hair being gone and we would tell them he had alopecia, explain what it was, and then they would just be sympathetic, but normal about it.  Which, I think, was the best thing to do.

It has been over a year now. 
Things are so much better now!  While Cole is still bald, we have just dealt with it and moved on.  It is a part of him now and I really can't imagine him with hair!
Time heals a lot of things!