At around eighteen months of age, a subtle shift began in my daughter Lexi's development that would profoundly reshape my understanding of loss. Once a lively toddler who bubbled with endless babbling and engaged enthusiastically in various activities, she became anxious and noticeably withdrawn—uninterested in pastimes she'd once cherished. Her gross and fine motor skills also seemed to wane, as she struggled to walk and her once-dexterous hands fumbled tasks they'd easily performed before. This change was abrupt and deeply unsettling, marking the beginning of a gut-wrenching journey.
By the age of three, Lexi had retained only a single word from her once-expansive vocabulary, and it was then that seizures introduced a stark and defining reality. The diagnosis that followed was Rett Syndrome, a label that felt both anchoring and profoundly terrifying. It seemed too clinical to encapsulate the emotional turbulence we were experiencing, and too impersonal to embody Lexi's fighting spirit.
The diagnosis brought intense grief. I grieved for Lexi's lost milestones, struggling to reconcile Lexi’s “normal” early development with the enormous difficulties she now faced. I also mourned the future I’d envisioned for my daughter—filled with conversations that might never flow and milestones she might never reach.
Embracing this grief was daunting, initially feeling like a betrayal of Lexi's life. However, intense reflection eventually revealed an unexpected truth: my grief did not negate my infinite love for my daughter, nor the present moment's wonders. I came to realize that love and loss could coexist.
Now years later, Lexi continues to amaze. Her desire to mobilize and engage with the world remains fierce. Though nonverbal, Lexi communicates with eye gazes, gestures, and a variety of sounds that vividly convey her thoughts and feelings. And her determination to connect, despite the hurdles, has reopened doors to interactions that I’d once feared lost forever.
To every parent on a similar journey, grappling with the anxieties and fears that surround an ominous diagnosis for your child, know this: grief is natural. It's okay to mourn the future you imagined for your child, while embracing the beauty in the unbreakable bond you share.
Dr. Kimberly
Dr. Kimberly Idoko
Certified Special Parent Coach
Dr. Kimberly is the mother and fierce advocate of Aiden and Lexi; Lexi is developmentally disabled by Rett Syndrome. Dr. Kimberly is a board-certified neurologist in clinical practice for more than 15 years; she is also a children’s rights attorney — the former director of healthcare advocacy at a Los Angeles-based legal agency. She is Yale College, Penn Medicine, Columbia Business, and Stanford Law trained.
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