Mamma, you worry a lot. Like, you worry all the time. Why do you worry so much?
My 10-year-old casually threw this comment out at me two weeks back after hearing me on the phone discussing my concerns about Lil D. I usually try not to discuss my myriads of daily concerns about him in front of the kids, but I guess I had been slipping.
Why DO I worry so much?
Maybe because as he is close to turning 14 and starting 8th grade, I see his years in school dwindling and I’m worrying more and more what he will do once his school years are done. How will his time be occupied? Will he be able to hold any kind of job? What will he do for fun? How will I keep him safe from predators? Will he learn the independent living skills he so needs to be able to have any sort of control and say over his personal self? Will we be 50-year-parents still making sure our adult son’s pants are not inside-out after he emerges from the bathroom, still supervising all parts of his shower? Sure, he is making small gains in independent living skills all the time, but it’s a legitimate worry.
Ok, let’s forget the future. Let’s think about the now. On top of all the “regular” challenges that come with his autism, Lil D was diagnosed with a serious vision impairment (the details of which I will keep private) a few months back. In this winding autism path we travel with him, this was one of the biggest potholes he has ever encountered.
Since then, I study his eyes incessantly, like a woman possessed. Every morning I look at them – does the good one still look good? Does it look like he is seeing ok? Why is he rubbing his eyes so much? Is the impaired one red? Why is it red this morning? Why is there liquid oozing out? Did he irritate that eye in the shower? Was it chlorine from the pool? Is it allergies? Are we looking at inflammation or some other internal medical mystery? Or, is there an infection growing for which surgery will be imminent? How do I know? How do I determine these things?
He certainly doesn’t “tell” me in the verbal sense of the word. I study his cues; I carry his actions and reactions in my heart. I keep detailed notes on how his day has been, and could he be reacting to anything in his environment, what his teachers are reporting, what his grandmother thinks (she is as powerful observer as well) and so on.Mamma, you worry a lot. Like, you worry all the time. Why do you worry so much?
It’s tough, baby. I don’t know how else to say it. I used to be better at compartmentalizing things – keep the worrying here, the fun times there, the smiles here, the parental concerns there and on and on and on. Someone who had been on the autism journey for a while said to my husband and I in our newbie state 11 years ago — you have to make happiness a priority. Pace yourself, as the adage goes. It’s a marathon; not a sprint.
My husband has heeded that advice way better than I. Maybe it’s because he leaves the house every morning and goes to the hospital, where he takes care of patients and deals with things that demand his total attention. He has to compartmentalize. He cannot afford to be worried about these things if he is to do his job well. He also recognizes that he needs to release. He needs outlets where it’s not about autism and worries and serious discussions all the time.
He just came back from a wonderful week away with old college friends, where he informed me the entire time they just joked and laughed and revisited old times and old stories, where they did bakwas batha (useless talk) and ragged on each other. A thoroughly relaxing and fun time. Not to say that I don’t get times like that too. But I have never been good at leaving the worry behind.
Then he came back to us, to me – all worried and un-fun, un-casual. I mean who wants to come back to that 24/7?
There’s got to be a better way, right? Hey caregivers – I’m talking to you. All you caregivers and supporters and parents of (or children of) those with autism and special needs, of those with illnesses or conditions who need constant care — how do you find your happy? How do you compartmentalize, I mean really compartmentalize? How do you teach yourself to let go, to not worry all the time, to place a priority on fun and happy? And not fake fun and happy that gives way to worry and concern as soon as you round the corner. I mean real fun and real happy where you honestly feel the joy in the moment and are able to hold on to that.
Where you are a pleasant person to be around, someone who gives as well as receives happy?
Maybe the answer lies here:
“..when someone says “please pray for me,” they are not just saying “let’s have lunch sometime.” They are issuing an invitation into the depths of their lives and their humanity- and often with some urgency. And worry is not a substitute for prayer. Worry is a starting place, but not a staying place. Worry invites me into prayer. As a staying place, worry can be self-indulgent, paralyzing, draining, and controlling. When I take worry into prayer, it doesn’t disappear, but it becomes smaller.” ― Sybil MacBeth, Praying in Color: Drawing a New Path to God