I know how you feel.
Days come when I wake up and think, I don’t want to do this.
I feel like the husk of a woman, emptied.
I am clay, a bowl dusty from the kiln, all scooped out by the master’s hand and cooling in the ashes. With His fingers He has crumbled and reshaped me again and again, smoothing me out. I am weary of the work, exhausted by the hollowing.
And sometimes, well, I just don’t want to be emptied anymore.
I wake up, open my eyes, and wish I could just not. I don’t want to go downstairs and live the day.
I don’t want to make breakfast, or pull out insulin pens and needles and charts and notations. I don’t want to count carbs, or think about blood sugar trends and patterns, or make sure Riley remembers to take her pills. I don’t want to juggle a thousand responsibilities while I teach Riley how to chop peppers, while I pack lunches and sign papers, while I check to see if today Adam soaked his bed again and I need to strip the sheets before the room smells fetid.
I don’t want to fight autism anymore, don’t want to drag words out of my children. I don’t want to have to make them talk to me, or make them hug me, or make them look into my eyes.
I don’t want to remind Riley to say “THing” instead of “fing” or not to mimic her brother, who is still miles behind her developmentally. I don’t want to think about the overwhelming number of things I need to teach them and make for them and structure so that they can understand. I don’t want to give Adam his 500th lesson on brushing his teeth and taking a bath without my help, and I don’t want to think about the fact that he’s nearly ten and still not catching on completely because some sort of neuropathy makes it impossible for him connect the dots. I don’t want to struggle through reading with Riley and realize how quickly the words slip away from her mind, how they don’t add up, how she falters over identifying the “silly” answers to her multiple choice questions. I don’t want to think about how the older she gets, the greater will be the part of education that requires good reading skills.
I don’t want to wonder anymore if my children understand me when I talk to them.
And this, after I start the week sitting at the table talking to the girls about Philippians 4:8,
Finally, brothers, whatever is true, whatever is right, whatever is pure, whatever is admirable—-if anything is excellent or praiseworthy—think on such things.
Zoe and I talk long about what admirable means, and praiseworthy, with Kevin interjecting thoughts from the kitchen as he dries the dishes. We arrive at the conclusion together, the three of us, that if we should think on such things, and if out of the overflow of the mouth the heart speaks (Luke 6:45), then we also should talk about such things too. And by extension, we should not be thinking and talking of things that are not admirable or praiseworthy, not with regard to ourselves, or our situations, or other people. We are meant to rejoice always (Philippians 4:4), to give thanks in all circumstances (1 Thessalonians 5:18).
“I wonder…can we help each other think this way?” I ask it openly, trying to imagine what that will look like in practical terms. Together, we discuss helping each other, deciding that we have questions to ask ourselves about our thoughts and about the things we are going to say before we say them. Is this something admirable or excellent or praiseworthy? I tell Zoe that she has my permission to ask me that question when I lose my way.
“This is so hard,” I say to her, wrapped up in the conversation, “and Dad and I struggle with this all the time.” And then I realize that somewhere along the way, we have all neglected Riley. Our words, the discourse and all its subtleties, have gone on too long and have woven in and through too much. Somewhere in all the language, we have lost her attention. She sits with her head on her arms, her anti-seizure medicine making her drowsy, drifting.
“Riley, what is something excellent or praiseworthy we can think about?” I ask her, trying to re-engage, trying to simplify and make sure she understands.
The question startles her, and she lifts shrouded eyes slowly in my direction. “I don’t know,” she says, shrugging. I smile, feeling compassion for her, appreciating that she has been sitting so quietly with us, so patiently, despite the fact that she has grown so sleepy and can’t make sense of the conversation anymore. I tell her that she can go upstairs and brush her teeth, get in bed, and her expression twists, as though this suggestion punishes her, as though it indicates disappointment on my part. “Honey, I’m not upset with you. You can stay if you like,” I tell her, “it’s just I can see how tired you are.” She nods, sliding out of her chair, ambling toward the stairs, shoulders slumped. I feel bruised by the disconnect, not wanting her to feel dismissed or her presence unwanted.
I shake my head, thinking of Adam and how different two children with the same disability can be. My son is going through something right now, and I’m not sure how to help him. And you have no idea how much I wish that the two of us could have a conversation about it. Or, maybe you do.
The night before, I had forced Adam to stay with us while Kevin read from Tom Sawyer. But while Tom hid from Aunt Polly, eating jam in her cupboard, and Aunt Polly mused about how she never could punish that precocious, willful boy, how he knew just how to manipulate her, Adam wept and complained and argued from his chair. His frustration sizzled, seared, burned.
“No! All done! No quiet! Finished! Time to go play!” He grieved with as much volume and drama as possible, and I don’t know what I’d been thinking.
“You know…”Kevin started slowly, pausing from the reading, “he probably isn’t getting much out of this. Should we really make him sit here?”
The gentle question nudged at the truth. I had expected too much of Adam, had created a situation that allowed my son little room for success. Instantly, I could see this. I agreed. Yes, he should be allowed to go. But first, now that I had required it, I had to get him to settle down. Otherwise, the leaving would just teach him to argue more, to fuss harder.
I chastised myself for creating the situation. I know how he feels. Sometimes he’s just tired of the hollowing. Sometimes he just doesn’t want to anymore.
“Adam,” I moved toward him, touching his arm. “No crying until 7:45, and then you can go play.” 3 minutes. 3 minutes of effort, and I could release him.
“Yes,” he said, straightening, trying. 1 minute and the wailing began again.
Kevin paused mid-sentence, sighing audibly, looking askance at our son.
I tried another tact, offering something to motivate him. We allow the kids time to unwind, do some quiet play in their rooms before lights out. “Adam. Choose. No crying till 7:45, go play. Or, crying, go to bed.”
“No crying. Go play,” Adam said. “Yes.” Again, he straightened. 1 minute and then the wailing began again. And the one thing I still don’t know is whether or not he understood the word until sandwiched there between crying and 7:45. One word lost and none of it means anything. I had believed he would understand, thought him able without the usual game of autistic pictionary.
I walked around to his side of the table and took him by the hand, determined to follow through. “Say ‘goodnight’ to everyone, Adam,” I said, and then moved toward the stairs. And as we walked, Adam cried harder, until we got to the bathroom and he screamed, “NO brush teeth!”
I draw the line at screaming. I shut the bathroom door and took his face in my hands. “No. No screaming at Mommy. No saying no to Mommy. No arguing and complaining, Adam. Fussing is finished.” I turned him around and gave him several solid smacks on the bottom. The moment hurt, raw and ugly. But disrespect demands correction lest it run wild, an aggressive, horrible vine, choking out all the healthy growth, covering over the entire landscape.
I had my son’s attention. He cried the way I used to as a child, gasping for breath. I breathed out slowly, closing my eyes, allowing the iron in my voice to melt away. I wrapped my arms around him, wiped his tears away with my thumbs, planted kisses on his cheeks. “It’s not okay to scream at Mommy,” I said to him. “You need to have a good attitude. No fussing. No arguing.”
“Yes,” he said quietly.
Riley appeared in the doorway, her eyes teary. “I don’t like it when Adam is upset,” she gushed, looking somewhere off to my right, afraid to meet my eyes, afraid of all the emotion she would read there.
“He’s okay,” I told her. “Go back and read with Daddy.”
But she couldn’t go until she saw him tucked into bed, hugged him, until she could see that he had stilled and no longer cried. Somehow her sadness made mine run still deeper. She understands him in a way I don’t. I hope this is all worth it, somewhere, somehow, I thought. I snuggled up to Adam, watching his face. A frown still pulled at his lips. “I am sad,” he said to me.
“I know. Why are you sad, Adam? Desperately, I wanted him to be able to communicate what he felt.
“No…” He paused, lost, searching for words, holding me in place with his bright blue eyes, which were earnest and sparking. “…I’m sorry,” he said finally, changing course.
“Why are you sorry, Adam?” I asked, wanting to know that he understood. He opened his mouth, but seemed stuck. “I’m sorry because…” I started for him.
“…crying is finished,” he said after a long pause.
“You’re sorry for fussing?”
“Yes,” he said, burrowing deeper into his blankets. I talked to him about how tomorrow night he could stay up and play, if he had a better attitude.
“Yes, play to-morrow,” he said.
And the next day, I felt as though we had accomplished something, he and I. It seemed as though the painful effort had achieved its intended purpose. In the morning, he started to complain when I told him it was time for school, but I stopped him, allowing the warning to show on my face. “Adam. You need to stop complaining.”
And he did.
That evening, when I made him read to me and he didn’t want to, I watched him struggle through. He’d look up at the clock, and back at the book, wanting to go. I’d hear his voice waiver, the displeasure bubbling below the surface, but he never allowed it to find freedom. He never argued, never told me “no,” or “all done.” I thought he understood, celebrated his trying.
Then yesterday, his teacher told me after school that he’d had another big blow up there, that he’d been screaming. And this past Sunday, Zoe had told me that he’s been doing the same thing in Bible class on Sunday mornings, that he disrupts the class nearly every week arguing and complaining and fussing because he doesn’t want to do the things they ask him to do. She had said he does this every time they have to color or draw, and privately, I had smirked. Adam has always disliked coloring and drawing.
But yesterday Adam’s teacher, whom I respect for all her gifts, stood outside telling me that she’s not sure he understands, not really, what we expect of him. “I’m not sure he’s understanding all this talking,” she said. “I’ve tried using more words, and it just gets worse.”
I felt confused. I had been so sure that what I’d seen at home would carry over to school. It seemed as though he understood, but she questioned his ability to answer why questions, to think through that side of things. “I’ve not seen him be able to answer any other why questions at school,” she said. “I’ve never seen a student in my classroom who was good at why. I think he just knows that if he doesn’t do what you say, he’ll get a spanking.”
And that could be so. And sometimes that’s enough. Obedience doesn’t require full understanding. As Kevin pointed out, sometimes we don’t get to know why.
But this conversation shattered me. “I feel like I need to handle this more autistically,” Adam’s teacher said, “to be sure he understands what we want him to do.” But what I heard in this and all that she said that afternoon was that somehow I had failed my son, that I spoke to him too much, that I needed to offer him more visual support.
Always the structure. Always the visual support. Sometimes, it’s all too much.
Sometimes, I just want to be able to speak to my child and know he understands me…my words, my voice. This child I carried, the one I birthed, the one I’ve poured myself out loving, the one I know in a way no one else can. Sometimes, I just want to talk to him the way other mothers talk to their sons. And I believe that sometimes, maybe in the rarest moments, Adam does understand. And sometimes, he doesn’t even need my words to understand, just my eyes, just all that remains unsaid between us.
His teacher never said that I had failed. She never said I was wrong. In fact, she kept saying, “Maybe he does understand. I don’t know.” She said she needed to try something different at school, because what I did wasn’t working there. But in my weariness, emptied, I heard so much more than the words she said.
And I left school thinking this:
Sometimes being a parent just hurts.
And sometimes it feels like there’s nothing left. And in the three-steps-back moments, it’s hard to see the two steps forward. And how, in those moments, do I find the excellent and praiseworthy? How do I think on such things?
And the answer is that sometimes, I just don’t know. Living this life leaves me emptied, hollow, aching hungry.
That’s when I run down the street, breathing His name like air rushing through my lips, YHWH, YHWH, asking, How? How, Lord?
And then, almost immediately, He offers me a tender morsel of grace, the memory of Adam’s Bible class teacher coming to me on Sunday, papers in her fingers. She showed me Adam’s hands, awkwardly traced on the stark page in blue crayon, covered and spilling over with the crooked letters of words he’d written quickly–forgiveness, mercy, truth–trying to fit them in the lines.
“I need to make a confession,” she’d said. “I told the kids to do this activity, and I didn’t talk to Adam specifically about it, didn’t ask him to do it, didn’t guide him in it or offer to help because…well, I really didn’t believe he could do it.”
She touched my arm, catching my eyes, continuing. “But then, after all the kids left the classroom, I found these.” She held the papers out to me. “Adam left his papers behind. And Adam had done the whole activity, by himself, the best he could. Without one bit of direction or help from me. I have learned something today. I’m sorry, but I underestimated him. And it’s not going to happen again.”
Slowly, the memory fills, warm like the sun on my face. Thank you, I tell Him. Thank you for teachers who love my son. Thank you for Adam’s surprises.
And then, another morsel, the echoes of a conversation with one of my best friends the night before. Steadfast, she’d stood in front of me quietly, arms folded, listening, absorbing, considering my vulnerable confession of weariness, worries, heartache over my son. Then she’d reminded me of something I’d said to her, about Adam feeling the way I did about the schedule we’ve had these last months. “You said you believed he felt desperate, like you, for some down time. Maybe all this is just part of that. Imagine feeling the way you do right now and not knowing how to tell anyone.”
Compassion washed over me. Adam wishes he could just not. I understand that. I feel it. I know how hard it is to find the excellent and praiseworthy, the rejoicing, even the acceptance, from the empty spaces. Thank you, I whisper, thank you for helping me understand what he can’t say with words.
And then later, today, still YHWH fills me, pouring out His grace sufficient.
My dear friend, my sister, sends a tender message, one I feel certain wasn’t meant only for me, because…Maybe you feel emptied too? Maybe you are fighting through, weary? Maybe you feel hollow-hungry over all your mothering and the struggle of a child, and you need this filling too?
Hear it deep, this thing she wrote, His words for you too:
I want to come take you away and let you rest and be for a bit…but I know life does not work that way. But this I can do for you…I can remind you that no matter what you feel or how impossible the situation seems sometimes, that YOU ARE A GOOD MOM. Better than good…great. I know the effort and energy you put into teaching and nurturing your children. I know how hard that job is because of all the additional challenges. But if Adam is struggling it is not because you have somehow failed him, it is because he is trying to grow…
If Adam struggles, it is not because I have somehow failed him. It is because he is trying to grow. And so, I struggle too, emptied, waiting to be filled again, trying to grow.
No, the excellent and the praiseworthy are not easy to find. It isn’t a simple thing to rejoice always, to give thanks, always. Sometimes life just hurts. Sometimes we’re all more than a little weary with the work. But still, He is faithful.
Emptied, I rage and weep like my son. I argue, complain to the King Eternal, Immortal, Invisible, the Only Wise God, about how I don’t want to anymore, how I’d rather just not. Only my sentences are broken, my language immature, and I don’t understand the why. I’m not good at the why. And He holds my face in His hands, and tells me that I must have a better attitude. “No crying. No arguing. No complaining,” He says to me.
But how? How Lord?
And then I see, what I could not before, the thing I will forget yet again.
He is excellent and praiseworthy. He is everything true, right, lovely, and admirable. And the rejoicing, the thanksgiving, only comes one way:
When He gathers me up in His arms; wipes my tears with thumbs as wide as the sky; plants kisses on my cheeks; filling me up all over again; telling me of the better, more beautiful, victorious things in days to come.
14 Do everything without complaining or arguing, 15 so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe 16 as you hold out[c] the word of life (Philippians 2: 14-16)…
…She is clothed with strength and dignity;
she can laugh at the days to come (Proverbs 31: 25)…