We fix all the things. From bloody noses and skinned knees, to broken hearts and shattered self images, we have the uncanny ability to make everything right—even when we're not quite sure ourselves how we manage to.
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Apparently, however, there are limits to this magic called a mother’s love—a reality I’ve been wrestling with as of late.
My son was diagnosed with intellectual disability later in childhood—at age 10, delayed a bit by pandemic upheaval. Since age 6, Cyrus had carried a clinical diagnosis of Opitz Kaveggia Syndrome—a rare, X chromosome-linked “mental retardation” disorder. Also known as FG Syndrome, the condition often involves “midline defects” like tethered spinal cord, brain abnormalities, and laryngeal cleft, in addition to low muscle tone, absolutely wicked constipation, immune deficiencies, and, well, intellectual disability.
No one symptom, however, is obligatory—not even intellectual disability, Dr. John Opitz, a legend in the world of genetics who discovered this and many other syndromes, and who so generously met with and diagnosed Cyrus in retirement, once told me.
The current diagnosis of intellectual disability eluded Cyrus for years. Neuropsychological testing repeatedly returned IQ scores in the normal range from ages 4 through 6—though he began to mass an entire collection of other cognitive diagnoses like ADHD, Auditory Processing Disorder, Visual Processing Disorder, Sensory Processing Disorder, executive dysfunction, slow processing speed, and nearly every learning disability known to man.
All the while, most medical and educational professionals dismissed Cyrus’ warning signs of intellectual disability, from delayed developmental milestones to woeful academic performance despite every intervention I could afford. Six-year-old Cyrus attended occupational, physical, and/or speech therapy five or six nights a week for years. He would catch up if he just worked harder, they insisted.
How wrong they were. After years of gaslighting, Cyrus’ IQ tanked an astonishing 30 points in two years, for reasons we still can’t fully explain.
Now, my adorable, sweet intellectually disabled child is turning into an intellectually disabled adult whom society simply doesn’t value. While he’s only 11, he’s in the final stage of puberty, his endocrinologist says—a process hastened by the growth hormone shots he takes nightly because his brain doesn’t produce enough. Middle school looms. And nothing I ’ve done—not the countless nights I ’ve lost sleep to investigate his myriad conditions, not the tens of thousands I ’ve thrown on extra resources insurance won’t cover—has changed this reality.
When and where it matters the most, I feel like I've failed. I didn't fix it. I didn't fix him. And the whole thing is gutting me.