Life is tough, but so are you.
It’s hard to manage expectations. Those we place on others, and those we place on ourselves.
We’re dealing with that now, as our daughter preps for college and our son … well, we honestly don’t know.
His diagnosis of Angelman Syndrome brings its own expectations – will he walk? Will he feed himself? Will he talk? Doctors always offer worst-case scenarios when a diagnosis is given, and that leaves parents a chance to say, “told you so,” when each of those milestones is surpassed.
We’ve been lucky that his is not on the more severe end. We have friends whose kids need feeding tubes or are confined to a wheelchair. Bowie walks, even runs when properly motivated. He can feed himself and does so constantly, at a level of any other 16-year-old boy with a ravenous appetite.
Even at his level, he will never be self-sufficient. He won’t go to college. He won’t be able to hold a job without constant one-on-one help. He’ll either live with us or he’ll live in a group home.
And that’s okay. It’s difficult to reconcile when his sister is starting her college journey, but the expectations are set at a different place.
Doesn’t mean it doesn’t hurt. The look on his face when others his age are going out with friends, learning to drive, all the usual high school things, can be heart-breaking. He can’t understand why he can’t do the same, and we can’t explain it to him.
That’s one silver lining in the very dark cloud that is his disorder – one minute he’s upset as he stares out the window, the next he’s on his iPad laughing hysterically at YouTube videos.
The lows are very low, but the highs are higher than anyone can imagine. It’s a matter of setting realistic expectations (there’s that word again) and trying not to lose sight of them.
That’s where self-expectations come in. What we expect from ourselves as parents when dealing with one of the kids or the other changes by the minute. It takes a level of patience that I’m only now discovering, and it’s a daily struggle to maintain.
But that’s a product of those expectations again: There’s no reason I can’t maintain my cool when a kid is pinching me, or throwing things, or pulling mom’s hair, and laughing the whole time. The reality is different. It is a true test of one’s ability to stay calm and rise above, and remember that he’s not doing it intentionally.
It’s a test I fail often.
But I’m getting better. Meditation, journaling, maintaining a calm demeanor in the face of chaos – those things all help.
What helps the most is a healthy dose of self-reflection and setting realistic expectations for myself. We’ve both gotten really good about tapping out when it’s too much and letting the other take the wheel for a little while.
Because the expectations we place on ourselves shape those we place on others. I’m just glad I’m finally seeing that and adjusting accordingly.
None of us walks alone, but it’s so much nicer when you have yourself as company along those walks.
Chris Brewster writes from his home in Waverly, New York. You can see more of his writing here. Chris also recently released his first book, A Lab in The Lab, which you can find here.