Guilt feelings plague many special needs parents. Guilt that we are not doing enough, guilt when we are too tired to do one more therapy session and pick up a book instead. Even deeper, fear that we caused our kid’s disability. Irrational, out of our hands. But real.
I would often have “guilt-flashbacks” during the first two years of Calvin’s life. I wrote about them to survive, to process, to remind me of the truth.
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Sometimes the visits catch me off guard. Just when I think I’ve said good-bye to it, it comes back.
It came again last week in the middle of the night. I woke up disoriented with my heart racing in my chest. The moonlight made its way through the mesh curtain and gave a muted glow to Calvin’s silhouette. My hand found its way to his chest and I waited for it to rise and fall. His little body moved quietly, breathing in and out, in and out.
The familiar screen-roll began to play, uninvited and impossible to stop. That’s when I know the visitor is back.
Guilt.
The rewind of my pregnancy started, pausing at each possible thing I could have done wrong. Something drastic enough that could rob a little boy of his life. Something drastic enough to fill our lives with the words a parent never wants to hear: microcephaly, brain damage, spasticity, developmental delay, brain differences. The weight of responsibility overwhelms and the grief overpowers.
My eyes closed and searched for sleep, for relief, but all I could see was a woman, pregnant. And she looked an awful lot like me.
The rewind slowed and I could see myself taking care of Evie, all covered in a rash. That’s it, I should have stayed away. I should have washed my hands better. I should have…
I saw myself running up and down the steep stairs a hundred times a day. I did too much. I should have taken it easy. And I want to tell her, “Walk up the stairs. Stop running!” But time gone by doesn’t listen and the woman I see keeps running up and down the stairs.
Darryl stirred beside me in bed and I remembered his words, “Don’t go down that road, Kara. It’s a road full of lies and leads to nowhere.”
But the rewind continued even though I wanted so badly to turn it off. It started to swirl more quickly and the accusations came faster, “Medication. Surely it was medication you took.” “Cambodia? Pregnant in Cambodia? How irresponsible!” I find myself beaten down by this visitor, Guilt, he’s no friend.
The doctor’s questions accused me, “Did you take drugs during this pregnancy?” He looked at me over his glasses waiting for my reply. And I wanted to weep. Nothing could have been further from the truth.
The screenplay jumped ahead and I found myself in the neurologist’s office with a six-month old boy in my arms. “It’s not your fault,” she said. She sighed feeling the heaviness in the room, “This is so rare, the chances of it happening are…” and she paused, “I don’t even want to tell you the chances because you’ll feel singled out, one in a million.”
Darryl woke up and saw me, and he knew. He knew the visitor was here. “It’s not your fault,” he whispered. And again, “It’s not your fault.”
The screenplay halted. My eyes watched our little boy sleeping peacefully and I rubbed my hand through his soft hair. “I’m sorry, Calvin. So sorry.” And all the while in my heart I cried, “Take this Lord, it’s too heavy for me.”
Somehow sleep found me again, wrapped in my husband’s warm arms with eyes closed. All of us lying in the muted moonlight and filling the air with quiet breaths, in and out. In and out.
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I’ve come a long ways but still feel guilt at unpredictable times. Like picking up my kids at school and watching the pre-K class running to grab their backpacks. And he’s not there with them. He’s at home in his wheelchair or laying on his bed with breathing machines. It kicks me in the gut, this guilt. How can we live with it?
I write about it in Living With Guilt.
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