Silver Anniversary

Yesterday was our silver anniversary, marking 25 years of marriage.  And I was thinking all day that if I'd somehow been able to see the future, and needed to pick out a husband specifically to be my partner in parenting Janey, I couldn't have picked a better man than Tony.

You don't hear nearly as much about autism fathers as autism mothers.  But I'm pretty sure Tony's not the only fantastic autism father out there (in fact, I know for a fact he isn't---here's a shout-out to you, Dan!)  Tony is Janey's rock star.  I'm okay in her eyes, but Tony is her hero.  When he gets home from work, I see a smile that I just don't see any other time.  Daddy takes her for car rides, dances with her, cooks her favorite foods, makes silly voices for her, delights in funny things she says---Daddy is the sunshine of her life.

Almost every afternoon when Tony walks through the door, I say "Thank you for coming home".  He often jokingly replies "As if I have a choice!"  But he does have a choice.  I know that some fathers, faced with the challenges Janey brings (or the more typical challenges that William and Freddy brought) would not come home---would decide that it was all a little more than he bargained for.  And I won't say what I hate to hear---that I don't know how single mothers do it.  I know how they do it.  I know you do what you have to do.  But I will say I can imagine how incredibly tougher my life would be doing this on my own.

I've read that the toughest years on a marriage when parenting a child like Janey are the early years, but I don't think that's necessarily true.  Most people understand that parenting children in the early years is a very intense thing.  But most people also know that it gets easier, that eventually there will come a day when the children don't need to be cared for 24/7, when the children have lives of their own.  That day will not come for Tony and me, or for so many families like ours.  We will take care of Janey for the rest of our lives.  I am not saying this to try to say what a burden it is, how unfair it is, any of that. It is just how it is.  But I don't think many people would argue when I say that does put a strain on a marriage.

However, I think in many ways Janey has given us a stronger marriage.  We need each other.  We need each other desperately.  When Tony gets home, I am thrilled---each and every day.  I am thrilled not always for the reasons you might think of when reading romance novels---I am thrilled because I know I will get a little break, that I can sit and read for a bit.  When we do get a little bit of time alone together, we treasure it.  Yesterday, we had a wonderful day while Janey was at school.  We watched some TV, we went out to lunch, we talked and laughed and reflected on the past 25 years.  I am sure many people do more exotic things for their silver anniversary.  They might take a cruise, or have a huge party, or buy each other big gifts.  But I think we had just as much fun.

I'm not going to say it's all been sunshine and roses.  There have been times when the stresses of our lives certainly brought out the worst in both of us.  There have been bickering middle of the night fights over who slept less, there have been times that we lashed out at each other because we had run out of patience a few toileting disasters ago, there have been arguments over nit-picky things we felt the other wasn't handling correctly.  But in looking back, those moments fade behind the good moments, the moments we together watched Janey do something that amazed us, the times we quoted Janey's latest video obsession and both of us got the reference and we laughed until we cried, the amazing moments when all three kids were together and happy and we couldn't believe we've created the family we have.

To all the fathers out there, indeed, to all the married couples out there living this uniquely challenging life----we raise a cup of coffee in a virtual toast to you.  And to Tony, Happy Anniversary.  I love you.

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.

Twenty Years

Baring any last minute divorce action, Tony and I will have been married 20 years on Thursday. Those have been good years----years with ups and down, with some serious health crises, with some losses of family and friends, but with more happiness and laughter and good times than bad.

The picture shows us just before we got married. I'd include an "after" picture, but I don't want to scare any people thinking of marriage off with how it aged me! Tony, however, looks oddly the same!

Autism certainly impacts our marriage. It can't help but do so. When you are under constant stress, when you never have a minute free of worry or supervision, when your time together is limited in the extreme---it affects you. At times, it's caused us to bicker over things so little that it would seem crazy looking back. It's caused us to feel like strangers living in the same house when we have done nothing but care for Janey for days. It's caused us to be exhausted, and not give each other our best. But overall, I would say it has made our marriage stronger. Part of that is just that both of us know it would be impossible without the other. Taking care of all our children has been a partnership, I think more so than with many husbands and wives. We need each other badly. Also, the few moments we get alone, we treasure. We don't take our time together for granted!

As with most people that get married, we took a leap of faith. I often think how lucky I got with Tony. Without us ever sitting down and figuring it all out, we have nearly identical philosophies on so many issues. Although most marriage advice writing would tell you otherwise, our children come before our marriage, and I think that has saved our marriage. We have a common goal---raising our kids as best we can. I think we both also are people that didn't go into marriage with a lot of expectations and visions. We didn't even picture the picket house in the suburbs, a perfect little boy and girl, youth sports and Disney trips and the best schools and all that. We didn't look a lot past just wanting to be together and have children. So when things got crazy, as they often seemed to, we didn't feel betrayed. We also share a strange ability to put aside the crazy times when we can. I can't think of how many days have been pure awful which we have ended with take-out Chinese, a funny TV show and a few enjoyable shared moments, and managed to end the day with a smile.

This all sounds pretty sappy and self-satisfied, reading it back, and I don't mean it to sound that way. It's been hard. But it's been a shared hard. I look forward (mostly) to the next 20 years!