But right now what I'm thinking about is the relationship between the parents of another patient, Alex, who died at the age of 7. Alex's mom and dad disagree vehemently about what is best for their daughter. Their friction is painful to watch: painful to watch two people who love each other (and both love their daughter), slip away from one another in a battle they both eventually lose.
Parenting is hard work. Period. Full stop.
Parenting can be downright nightmarishly difficult when your child has serious issues. And keeping a marriage together through the stress is another herculean task. Although I've heard the divorce rate among parents of autistic children or among parents who have lost a child estimated to be around 80%, I haven't found any actual studies to support those statistics (and I even found one that refutes this oft-quoted number). Nonetheless, no one disputes the incredible stress these situations put on a marriage.
I remember a conversation I had with another mom in the hospital once. She told me that a friend of hers had been gushing about how incredible it was that she and her husband were "so together" in the fight for their child's life, and how they were just making "an incredibly strong marriage." My friend looked at me with eyebrows fully raised, and said, "How wrong could she be? I didn't even know what to say. We're fighting more than we ever, ever have, and it feels like a struggle all the time." And the way my friend described their relationship, that's exactly how almost everyone I've ever talked to describes it.
It's not hard to see why this happens. When your child is seriously ill, there are almost always decisions to be made. Big decisions about treatment and lifestyle and general strategy. And those decisions are often being made with one eye closed and only half the information in front of you, because, unfortunately, there's still no medical crystal ball that will magically reveal exactly what's going on there in that tiny body that you grew in your tummy or cradled at her first lusty cry of life or loved from the moment her picture arrived in your mailbox. So inside your very own head, you always hear at least two conflicting voices, arguing about the best course of action.
And as soon as your partner decides to take one of those positions up, it's almost inevitable that you will position yourself in the opposing voice. As if you, yourself, have to make sure that all sides are being heard. It's so natural that it's almost scary. I've even found myself switching sides as soon as I've heard my husband's opinion.
I guess that either makes me the world's most difficult spouse, or maybe just human.
In our own marriage, we tend to have some loosely defined positions that define our play across the field of liver disease. I tend to take the "ease up, and check out our glass half-full!" approach, while Jörg tends to be of the "batten down the hatches because that damn glass is half-empty!" type of parent. Except that Jörg doesn't use swear words, even in German.
This means that I mainly push for Annika to do pretty much whatever she wants to, in the interest of maximizing her quality of life. Jörg, on the other hand, is fond of pointing out that it doesn't really maximize her quality of life if she does "fun stuff" that ends up putting her in the hospital, which is certainly not the locale for maximum childhood quality time.
So I was the parent who thought up Annika's mini-vacation to Chicago. And I was the parent who let her stay up way past her bedtime and chow down on distinctly non-low-sodium items throughout our Chicago escape. And I was the parent who indulged the thrill rides and the long day of walking about and general excitement.
And I am the parent staying up late alone, on my second glass of wine, feeling guilty about the bright red blood in Annika's stool tonight.