An Undiscovered Country

Being the parent of a kid with a disability means a lot of very specific concerns, but one of the more daunting can be the firsts. Advice from other parents can be of limited value because our kids are so different, in ways that really do matter a great deal, so even other special needs parents can’t always really help very much. It’s a bit like the Tolstoy quote about happy families all being the same, but dysfunctional ones being wholly unique. Our kids present scenarios and reactions that are almost always uninformed by experience, and so the firsts can be scary for us. The emotionally hard firsts are particularly tricky, and this week will present a big one. Schuyler will be attending her first funeral.

An aunt of mine passed away last week, pretty unexpectedly. She was a central figure from my childhood, as she and my uncle and cousin were easily our closest extended family when I was growing up out in west Texas. When I got the call a few days ago, I felt a real sense of loss, not as much as a middle-aged man as the little boy that knew her back then. She’d seen a lot of loss and pain over the years, going all the way back to my uncle’s tragic accidental death over thirty-five years ago, but through it all she remained a positive and charming person of unwavering strength. The world is a legitimately diminished place with her gone from it.

To Schuyler, my aunt was a kind of indirect presence, known through Facebook and old photographs more than anything else. They met at least once, but Schuyler was a baby and almost certainly doesn’t remember. As far as the emotional experience of a first funeral goes, she should be able to navigate the emotional uncertainties. I was always afraid her first funeral would be that of a classmate, and in fact she had at least one close call a few years ago. No one was ready for that. This week should be okay.

But I’m not entirely certain of that. For one thing, Schuyler is extremely sensitive to the emotions of others. She has a natural empathy that can be astonishing to behold, and it occasionally pulls her into unfamiliar emotional places. This is one of the things about my daughter that I value the most, but it does mean that she can be surprisingly vulnerable. It’s a good thing for her, taking another step into an emotionally complex world. But she might need some hand holding, and that’s okay.

In addition to her natural empathy, Schuyler holds on to some fantastical ideas about her world, a place in which monsters and and magic and mysticism still play a central part in her thinking. She understands the difference between that world and the real one in which she lives, but she still copes with the hard stuff with a touch of disconnect. This week, she’ll face one of the hardest things the world has waiting for her. She’ll face grief, the kind that represents the natural order of things, but also a level of pain and finality that will undoubtedly challenge her.

I’m not entirely certain how she’ll respond, but if there’s one thing I’ve come to expect from Schuyler in unknowable circumstances, it’s that she’ll surprise me with her fortitude and maybe even shame me a little for my doubts.

If there’s anything I hope Schuyler takes away from the experience, I guess it’s that a life lived well can conclude with a great deal of love and celebration, and that sadness occupies a natural place in our lives, difficult though it may be to process. That part she gets already, I know. I just want her to understand that it’s okay. It’s hard, and one day she’ll have even deeper and more personal grief to digest and attempt to comprehend. But that’s part of the complete human experience.

As she gets older, Schuyler is discovering how challenging that package deal really can be. And that, too, is okay.