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Sunday, April 27, 2014

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.


Unknown said...

What a beautiful testament to your marriage and family. I love that you really do "live in the moment" as that is the goal for so many of us. Happy Anniversary!

Antti said...

Of course you would, with eyes open! Congratulations!

Sabrina Steyling said...

Such a beautiful post! Happy anniversary to you and Tony!

Unknown said...

Hi Suzanne! I saw a story the other night on the Nightly News with Brian Williams about autism and "affinity therapy." This particular story made me think about the many times you've written about Janey and her love of music, so I thought I'd pass the link on to you. Also, I'm hijacking my son's Google account right now, so if you'd like to get in touch, it's Here's the link to the story:


Anonymous said...


Hi there my name is Kevin. I was searching "autism in girls" on google and I came across your blog. I am a divorce 35yo dad of two kids. Neither have autism. The reason I was searching the internet is because I met this beautiful woman who has stolen my heart and she has an 8yo daughter with Autism. We started seeing one another on Valentine's Day and try to spend as much time together as possible on our weekend’s kid free. I have met her daughter a hand full of times and so far they have gone very well. I have been trying to learn as much as I can about autism so I can better be prepared. I am completely comfortable interacting with her on a daily basis and understand that she will always be a part of our daily lives. Even beyond 18. Where my concern does come into play is when our kids do finally meet. My daughter is 12 and my son is 6. I am worry about how my son and her daughter with interact playing since she is an only child and my son is younger. She has a very particular way she does things when she lining up her toys. And you cannot move them! Like the toy frog she put on my foot the first time I met her…LOL! She also has a thing with light switches...she has to be the one to turn them on and off. I am afraid he will be confused and scared to play with her because she might have a meltdown if and when something doesn’t go right. It’s very hard to blend a family in normal circumstances. I realize there will be issues that come up and I just want things to go as smooth as they possibly can. I also worry about being able to do thing together. Any advice would be greatly appreciated!

Thank you,