It’s not that taking care of Ben is all that physically difficult, it’s that dealing with Thunderfoot is mentally exhausting. I think it’s exhausting for Ben, too. It’s like the pirate ship ride at the fair. At the end of each day, we celebrate the fact that we didn’t fall off.
The Peel
“You guys are great! Thank you so much for everything you are doing to help me,” Ben gushes. Things that make Ben happy are a good workout, a trip to Meijer, a Chick-fil-A milkshake, a new spit cup, a juicy piece of meat, a bowl of ice cream after dinner, remembering how to get somewhere, a back-scratch, and going to hear his favorite musician play on stage. Simple things go a long way for Ben.
Just moments later, Thunderfoot exclaims, “You don’t give a damn about me!” He got ignored in a group setting, he lost his favorite DVD, someone said ‘No’ to his request, we reminded him to do something before he had a chance to remember it on his own, or we weren’t as excited as he was about who-knows-what. Simple things can also unleash madness.
The place in the middle is the most complicated. Which way is the ship swinging? Am I talking to Ben or Thunderfoot right now? It’s hard to know how to respond to him other than as a deer-in-the-headlights. Times like these are when he wants to go somewhere but his timing is off, when he wants someone to give him answers but no answers are available, when someone drives a different way than he is expecting, when he’s trying to communicate but can’t find the words, or when we are guessing incorrectly at his meaning.
Anything can change his mood without a moment’s notice. Sometimes we just have to remind ourselves that his mood is not necessarily tied to something we did or didn’t do. Some days are not good days because he didn’t sleep well or he doesn’t feel normal. Other times, he has an idea that none of us understand, but it makes him ecstatic. There is no making sense of it all.
The Fruit
Perhaps the Pirate Ship is most exhausting when we are trying to resist it. There is no way to stop the momentum of the swing even if we do everything right. The best thing to do is to try to enjoy the thrill of the ride. Even though I don’t enjoy interacting with Thunderfoot in the moment, I get excited about having something to write about in my blog. When the ship is racing mightily toward rage, I take heart that it will soon be swinging blissfully toward sweetness.
I resist the swing of the ship when I try to reason with him or placate him when he is upset. I only frustrate myself when I have my own agenda which doesn’t revolve around him. Instead, I try to refrain from responding immediately to see if a response is necessary. I keep thinking about how short this period of time is in the context of a lifetime. I think ahead to the time when my children will be taking care of me and pray that our experience will be different.
Days are rarely dull and my attention is always on high alert, but I have also learned to enjoy the moment and look for the positives. I'm ready to ride this ship one more day.
Lord, you have changed me so much. I remember asking you once to teach me patience and contentment. You are doing that very thing. I trust you to stop this ship when the timing is right and before anyone falls off prematurely.
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