A friend once asked me how I was, and as I tried to figure out how to respond, he said, “It’s okay to say some things are great and some things suck. Life can be a mixed bag.” Today was one of those days. Here’s what I wrote about it:
Hope hangs by a single thread today, and I am clinging to it with all I’ve got. All those questions I threw out years ago as irrelevant, unhelpful, unholy and unanswerable are resurfacing:
Why God? Why so much disability? Why can’t he be just a little bit less autistic?
Would he be more capable if I had just…? You-fill-in-the-blank, and I’ve probably thought it. What it all comes down to is this horrible feeling of failure, this guilt of not being enough, this condemnation over what is beyond my control but somehow must have been within my grasp if only I was better, stronger, more proactive.
Words spoken by others—“So it’s your fault!”—words I responded to with a laugh and a “You’re right!” because I learned early in life that the worst sin I could commit was making someone else feel bad, even if they deserved it. I regret not saying what I should have said; but I would have regretted saying it, too. To be impolite has never been an option.
Why am I teetering on the brink today? I feel such sadness, such fear of the future.
Two weeks of winter break from school went well this year—Jay took vacation time and we were all home together. But two weeks is still two weeks, and I was unapologetically ready for school to start again. Then today, on his second day back, Zack put his head down on the desk and covered himself with his coat until they called me to come and get him—at 9 a.m. He was flushed and glassy-eyed when I got there but happy and chatting by the time we were halfway home.
(Disability doesn’t mean he’s not smart.)
We entered the house, and I marched my son to his bed “because if you’re too sick for school, you need to be in bed.” I’ve spent the rest of the day trying to make home as unrewarding as possible so school is the better option.
I feel unraveled. But I can’t blame Zack. For him, there isn’t anything better than being with Mom and Dad.
Jay returned to work yesterday. Zack heard the car drive away and ran to the door. Looking out the window, he whispered “Bye honey” and the sweetness of his voice split my heart wide open.
I look into his sparkling eyes and he flashes me that wide smile and I’m done for. I never want to see that fade. But I fear too many days like today. Days when we’re doing nothing of value according to the standards in my mind. Days when taking a walk to the library is our only true accomplishment.
On the one hand, it’s really not so bad. But what if I go mad with the monotony of it all? Who will take care of us then?
I don’t need to hear that I’m brave. I don’t want people to say they don’t know how I do it. That feels like pity, and pity weakens me.
I need strength.
I need patience.
I need perseverance.
I don’t want to need perseverance. But it’s the word for me this year. I heard it loud and clear in yoga class when the instructor said, “Think of a word to be your theme for the coming year.”
The instant she said that, the word PERSEVERANCE boldly staked its claim in my mind. It didn’t ask my permission. It didn’t give wiggle room.
Really, Lord? I thought. I don’t want that word.
Then came the familiar voice in my thoughts: It’s not a bad word, Honey. Take My hand; keep holding on to Me. I’m with you. Just keep doing what you’re doing, and it’s going to be alright.
So I’m working on living with this word. But we’re only on day four of the new year and I haven’t gotten over being a bit ticked off at God’s choice.
Perseverance. I’m holding on to that solitary strand of hope today. And I’m trusting that God’s got me in His grip.