What Is Worse, What Is Better

As of yesterday, Tony and I have been married 22 years.  Anniversaries always for us provoke some looking back and reflection, and as with every single aspect of both of our lives, Janey's autism played a big part in that thinking.

How has autism affected our marriage?  I'll start with the "for worse" part, because I want to be honest.  It's tough on a marriage to have a child with disabilities, and Janey's particular brand of autism has been a huge challenge.  To start with, we almost never get time alone together.  "Date night?"  Don't make me laugh.  There isn't exactly a long line of people asking to watch Janey.  It's too hard for almost everyone.  We are extremely lucky in having William and Freddy.  Yesterday, Freddy watched Janey so we could go out to dinner.  But that was a special gift to us.  We can't ask for them to do that often---it's a huge job.  Janey requires our attention at every moment she is awake and home---one of us is always, always assigned to watching her.  We don't have a lot of time to just be together.  She wakes basically every night, often.  I won't get detailed, but you can guess how that affects a marriage.  And there is the stress---the endless stress that makes it hard for us to be at our best with each other.

But there are "for better" parts too.  We need each other---desperately.  I don't think either of us would ever entertain even a thought of trying to go it alone with Janey.  We have to be a team.  In our particular case, I think autism has also sharpened our shared philosophies.  From the start, we felt that our kids would come first in our lives, and every day, I see Tony putting that philosophy to work with Janey.  I love seeing them cook together, run together, laugh together.  I love hearing his patience with her.  The moments she says something adorable or unexpected, the laughter and happiness we share is something beyond almost any joy I've felt in life.  We also appreciate our boys extremely much.  We realize what an amazing gift children are, and how astonishing every milestone, every graduation or college acceptance or job gotten or A report card is.  We don't take much for granted.

What is the biggest impact Janey has had on our marriage?  I think it's on our view of the future.  There is not an end to parenting Janey.  Not that there is an end to parenting any children, but with most kids, there wil come a day when the day to day parenting is over.  With Janey, that is not going to happen.  Our future includes her.  There is not going to be a relaxed retirement for us.  We are three, not two.  And that sharpens the present.  I think we are more prone to enjoy the little now moments.  When we all are enjoying a good mess of Chinese food, laughing and joking and eating, we live in that moment.  We don't sit and figure out how we are going to afford that retirement home in Florida.  We think about how we are going to enjoy that next cup of coffee.

I've noticed a lot of songs and writing about anniversaries deal with the question "Would you do it all again?"  If we could have looked into the future and seen today, would we have run from each other before ever marrying?  I don't think so.  I am not being blindly positive right now.  I am not saying my mind doesn't sometimes drift to imagining a different life.  But I know how lucky I am to have a happy marriage, to have a husband that I love, to be with a man that has the same core beliefs in life I do.  Janey, as well as our sons, have made our life what is is, and yes, I'd do it again.  With my eyes open, I would do it again.  Here's to 22 more years.