Joyful

                So, George Takei, the actor and great patron saint of geeky internet memes has posted something on Facebook that said, "Talking about problems is our greatest addiction. Break the habit. Talk about your joys."  While I don't one hundred percent agree (we cannot fix what we do not acknowledge), it did give an idea for this post. (Thanks Uncle George!)

                I wanna talk about some joys all you parents of typical kids probably are not going to be granted the privilege of knowing.  Not that there isn't a million joys in any parent's life.  Not that we don't ALL take the small things for granted occasionally. But there are moments that hold a different sweetness and flavor when your kid is truly different from others. And if you are just starting down this crazy path, someone needs to tell you this.  Forget all that "God won't give you anything more than you can handle " nonsense. That is almost always said by someone who does not have quite as much to handle, thankyouverymuch. They mean well but it comes off as a tad insensitive, at best.  You need someone to say, "Yes, sometimes is tough but it ain't all violins and handkerchiefs .  Sometimes its funny and awesome in ways no one else ever gets to see."  Little things that probably don't mean much to a typical kid's life.                   

                For example, swearing. Seriously you have no idea. (I may one day, write a post about why the f bomb is the most beautiful word in the English language. I have a reason. I'm not quite ready though for sharing that one yet.)  But swearing is a deliberate, albeit naughty, act.  When you are (mistakenly)  told your kid has little cognitive ability, using a swear word at the right (wrong?) moment is great indicator that something is going on in those adorable heads of theirs.  Same with lying, mind you I do NOT want to be raising the next Professor Moriarty, but I had to walk out of the room the first time Feisty Pants lied to me.  Lying means they know what they did was wrong and there will be consequences for it. I did not want to her to see me literally jump for joy and set up a bad precedent. Funny, I did not have that reaction the first time her sister lied or swore.

                  Even simpler things are joyful, one of my favorites is breathing.  Quiet, relaxed breathing is a major joy for me.  Feisty Pants does not swallow well.  She has been very sick about a bazillion times, it seems.  Goo has done cpr on her more than a handful of times.   Her not breathing is scary in ways I don't even have words to describe.  Struggling to breathe is almost as bad.  She is a noisy breather even when she is well due to the swallowing issues.  So, days when the universe is kind to us and she is relaxed and breathing quietly are a joy to behold. Not exaggerating. I can simply watch her breathe like that for ages. Does more for my soul than all the yoga and dark chocolate in the world can, combined.

                  Teasing is a fun one.   Not teasing her. Watching her tease someone else.  Feisty Pants is called Feisty Pants for a reason.  She is mischievous and clever and ALWAYS thinks she should be in charge.  So, she gets a big a kick of minor defiance of any silly rule adults think to try impose on her.  She will wait until her father is NOT looking until slowly doing something funny (like removing socks or pulling apart her feeding tube from its adapter) while going "Oh GOOO. Oh GOOO" in a sing song voice to make her father lose his mind.  This will keep her entertained for eons. (Again, if she does turn out to be a Bond villain, I do apologize. It's just that it's so damn funny now.)

                   My new joy with her is a joy of her own.  Fp's speech is very garbled, often she doesn't speak to many people because she gets quickly frustrated at not being understood.  Until you have spent enough time with her, you will not understand her speech. It sounds mostly like she is whining. She knows what she is trying to say.  She knows she is hard to understand.   Not many others do.  So when someone just simply understands and replies like say, any other frigging human being on the planet, she beams from ear to ear.  If it's a stranger who understands, she actually will laugh out loud.  That is a MAJOR joyful moment for her and therefore, I think, an even bigger one for me. 

                    So, you will find joys and peace in the chaos.  You will have loads more fun than you realize when this ride starts.  You just have be ready to see them for what they are.  But isn't everything that way, anyway?