Our own dance...

I have written before about the moments that catch me off guard in regards to our not so normal life with Max.

This evening, I had one of those moments.  I'm always struck with a pang of guilt for feeling sad that life isn't what I thought it might be.  Because, really our lives are pretty great.  Even with all of the challenges we have.

I was cradling my ever growing Max this evening after dinner, trying to hold his arms steady.  He had just poked himself in the eye pretty hard, and was wincing from the pain of it.  All day he's had a lot of neuro activity, and has had three seizures.  They aren't so harsh that we need to treat with rescue medicine.  It just means extra watching and making sure he's safe from his strong arms and legs when he can't control them.

As I was holding Max, I was skimming through Facebook and saw a string of comments on Max's school's parent page.  Tonight was the Mother/Son event.  I don't know if it was a dance, or a party, or what is done.  I just saw how much fun every one had, and the exchanges of thanks for a job well done on a great event.

That's when it hit me...a great big huge gulf between our world and the world his classmates and their families live in.  It's not a pity party.  What is it? Acknowledgement, acceptance, apathy?

I'm not naive enough to think that they all have perfect lives, without struggle, without their own special circumstances.  We all do.  Every person in the world has something. 

But, tonight as I held my 9 1/2 year old big boy like a baby to protect him from his own punches and pokes in the eye, I wondered what it must be like to have a Mother/Son event.  Do the boys go play with their mates, leaving the moms to find things to talk about?  Are the boys still fine being seen with mom, or are they to the point of being embarrassed around their friends?  Do the moms get a dance or two with their little boys who are growing up just as quickly as mine is?

I don't know.  I'll likely never know what that is.  That's not the world we live in.  And that's okay, I suppose.  I won't know that world and how special it can be.  But, I have my world. And I know exactly how special that is.  And we can dance here too.  And have cuddles.  Lots and lots of cuddles.  I bet they don't have that at Mother/Son events.