DEBORAH: One of my children suffered a birth injury that left her partially paralyzed in one arm. My doctor initially told me she’d recover in six months. When six months came and went without much recovery, I was bursting with concern and dread. Apparently, most babies with injuries at C5 and C6 do recover, but mine did not—not even after much faith, prayer, fasting, and priesthood blessings that promised a full recovery. By her ninth month milestone, I realized I’d have to accept that, for my sweet baby, a poor recovery was her “full” recovery.
Mothers of a child with disability feel a sisterhood with other mothers of disabled children, regardless of the child’s challenge. There is no end to the worry, the exhaustion at overcoming obstacles, the fear that treatment choices made aren’t the best or are simply wrong. The uncertainty feels very different than any other uncertainty I’ve experienced mothering an able-bodied or able-minded child. And so often people said the wrong things.
- Be grateful it’s not her leg.
- Be grateful it happened to a daughter and not to a son.
- Be grateful she’s alive.
- So-and-So has a child with X, and that would be so much harder.
- God has a plan.
- She’s a special spirit with a special job to do in mortality.
And on and on. Each of these things was expressed to me regularly during her infancy. Every time I heard them, they stung; and every time they stung, I felt guilty. I understood people meant well, and, at the time, I couldn’t place my finger on why these things hurt me. I now realize each, in its way, inadvertently denied the necessity of the grieving process and inhibited my preparation and planning. Perhaps the statements helped others feel less awkward about our family’s new challenges, but they weren’t helpful. This doesn’t mean I felt angry or resentful toward the people who said these things. It just meant—it meant I was alone. We were alone—my little family, an island with our friends swimming around us, observing us, but unable to get past the bar and provide the comfort we needed.
One Sunday evening, I attended a Relief Society fireside that had been heavily promoted in my rural stake because the featured speaker was a former General Relief Society President. The excitement surrounding the fireside was palpable. My infant daughter was still nursing, so she came along with me, but she was fussy. I wound up in the foyer, listening to the speaker rather than watching her command the podium.
Having a former General Relief Society President in our area kept women in their seats, so I was alone in the foyer throughout her talk. It was enjoyable, but soon she began telling the story of the birth of one “special grandchild,” of the injury he incurred at birth, of the way his arm hung limply and uselessly at his side, and of the concern for him her family experienced. I felt every inch of her pain. She then recounted receiving the same counsel from physicians that I’d received: Do these exercises; recovery will take six months. She told of her family’s great faith, their prayers and fasts, and of the promise of recovery made in a priesthood blessing.
I pulled my bundled baby closer to my heart and steeled myself. I knew what was coming.
“The Lord heard our family’s prayers and healed our precious grandchild. Today, you’d never know the child had a rocky start. I stand here now to testify that I know his healing wouldn’t come without the power of a priesthood blessing and great trust in the promises of the Lord.”
I paraphrase, of course, but that was the message. More than twenty-five years have passed, and I still feel the memory like the thrust of a sword in my heart. I have no recollection of anything she said after the story, but I vividly recall standing alone in an empty foyer, cradling my child who hadn’t been healed despite faith, prayers, and the promises made in multiple priesthood blessings. I remember reminding myself that the speaker didn’t know of which she spoke, that she’d have been gentler if she had, and that I would (so help me God) raise my baby in faith even though mine had not been rewarded. I was too numb to move.
I was grateful when the closing prayer began. I planned to bolt the moment the “amen” was said. I didn’t want to face all the smiling women in my stake for whom the talk was uplifting. I feared I’d fall apart. I hate falling apart, and I knew the numb wouldn’t last.
Surprisingly, the doors to the foyer swung open before that “amen” had a chance to trail into the usual chatter. Before I could take a single step toward the glass doors, I was set upon by the good sisters in my ward and stake, women I didn’t even know knew my name or about my child. They bee-lined to me, encircling me. One woman reached over my baby and took me by the shoulders. She made me look her in the eye and she said, “Your faith is whole.” I nodded, attempted to smile, and darted out of the building as fast as I could. I wept as I drove my baby home.
Needless to say, that particular talk on that particular occasion did nothing to increase my faith in God. But the love and support of the same sisters who may have previously spoken imperfectly to me regarding our family’s new challenge did, in fact, strengthen me.
Once home, I put both my baby and my toddler to bed. I didn’t tell my husband what had happened, not for days. So much of my world had changed in the span of mere months. My expectations had been turned upside down. My God had disappointed me and, more importantly, he’d disappointed my innocent daughter. I’d never again see my existence as the center of some cosmic reward system centered around eternal promises. Life had become a gift, not a promise, and faith had partnered with hard reality. Mysticism may have evaporated, but faith in myself had begun, no matter what anyone else said.