Love and Marriage

I keep thinking it would be really cool to get Michael to write something here in keeping with the spirit of Down syndrome awareness . . . you know, something from a dad's point of view. But it's not likely since (a) he would probably see it as an assignment and he's got enough writing assignments for work, and (b) he's not one to lay his heart and life open wide for the world to see like I am. Still, I may work on him . . .

In the meantime, I thought I'd talk a little bit about Michael and our marriage, or more specifically, how Finn's diagnosis has impacted our marriage - and our family.

I remember reading somewhere recently that the divorce rate among couples who have a special needs child is something like 80%. Wow. It's really not hard to see, I guess, how the challenges presented by having a special needs child can test a marriage beyond its limits. Heck, having an average child can test a marriage. But the unique stress and emotional turmoil brought on by a child's serious diagnosis certainly has the potential to make or break a marriage.

I've also read and heard so many times that it's almost become a cliche that the challenges presented by having children can make strong marriages stronger and weak marriages break. I have found that to be true, especially with Finn and his diagnosis. Michael and I are lucky that we already had a strong marriage. Well, luck is really a small part of it - really the strength of our marriage has been won through lots of hard work. We've had our share of ups and downs - especially early on in our marriage - and I wonder if we had had Finn 6 years ago, what it would have done to our marriage. It might have been more than our marriage could withstand at that point. So I guess we were fortunate that we were not faced with this particular challenge until a time when we had built a very strong foundation between the two of us. Now it feels like Finn's diagnosis, and all the fears, worries, grief, hope, stress, turmoil that come with it, have cemented our marriage.

Michael's always been the more laid back one, in contrast to my . . . er, slightly . . . high strung temperament. He's always been the one to reassure me that everything is going to be okay when I am freaking out about something. When I found out I was carrying twins, I had gone to the doctor by myself that day, not knowing they were going to do an ultrasound. So I was by myself when I was told that I was carrying twins. I still remember calling Michael at work, sobbing. He was surprised at the news, but the first words out of his mouth were, "It's going to be okay. Everything is going to be fine." And he meant it. And so it goes with Michael. It was the same thing when I found out I was pregnant with Lilah . . . our first unplanned pregnancy, although we had actually been discussing whether or not to have another baby. But the fact that it was unplanned threw me for a loop at first, and I cried, and Michael was the one telling me "It's okay, it's all going to be fine."

The immediate aftermath of Finn's birth, in my memory, seems filled with trauma. The panicked drive to the ER with Finn in his carseat spitting up blood . . . being told that our one-day-old baby needed major abdominal surgery . . . the hospital stay . . . first being told that it was suspected that he had Down syndrome . . . and then having that confirmed. It still hurts to think back on those early days and weeks. But through it all, Michael was holding my hand and telling me that everything was going to be okay, and that whatever we had to face, we would face together. And we have.

Michael has listened to me rant. He's held my hand through countless tears. He's brought the laughter back after that initial time of darkness and despair. I really don't know what I've done to shore him up through all this. I suppose our needs are different because our reactions are different. Michael, it seems, has been far more accepting of the situation from the very beginning. In a little twist of irony, he spent years working with people with all kinds of disabilities: deaf (he's fluent in ASL and worked as a sign language interpreter for a number of years), blind, autistic, CP, and the list goes on. So dealing with a disability is not as foreign and frightening to him. He's said to me before that he can't help but feel that he's come full circle in a way, and that it feels like all the work he did before was preparation for having his own child with a disability.

I worry of course about Finn's health, although now that he seems pretty healthy and doesn't appear to have any serious medical issues associated with DS, I don't worry so much about his health. I worry about his future, about his being faced with prejudice, about his being accepted and embraced by his peers, about his happiness and his ability to live a full life and become independent some day. I worry about how knowing he has DS will impact him emotionally. I worry about who will take care of him when Michael and I are gone. And I'm sure Michael worries about those things too, although maybe to different degrees than I do. I know he does still worry about his health (he still wonders aloud quite often if Finn is so cranky because maybe his tummy still bothers him from his surgery). He has said that he hopes he will be able to have meaningful conversations with Finn some day. And that he hopes Finn will have the ability to appreciate and enjoy music, and maybe even play a guitar.

So anyway, this is all stuff that we talk about. And it's good that we talk about it. And sometimes, we just put Finn in bed between us and gaze at him and just feel the love. That's the best.