Ultrasounds often stand out as highlights of the pregnancy journey. Whether you’re discovering the gender, witnessing that precious heartbeat, or confirming the baby’s size and position as the due date approaches, there’s immense joy in catching a glimpse of what lies ahead.
One might assume that the revelation of “twins” would be the most transformative moment during an ultrasound. However, for us, the real shift came from a chilling experience that no mother hopes to face. It was the silence of the ultrasound technician, the prolonged focus on a single spot, and the agonizing return for a second look. It felt as if time itself had come to a halt.
The following weeks became a blur of uncertainty. Something was amiss; everything felt wrong. Their brains—those tiny, precious brains—were not developing as they should. We received the diagnosis of Lissencephaly, a rare neurological condition, and the prognosis was bleak.
We were given warnings: low muscle tone, developmental delays, seizures, infantile spasms, vision impairments, feeding difficulties, and an increased risk of pneumonia and failure to thrive. The expected lifespan was estimated at just two years. We clung to hope that this prediction was inaccurate, but deep down, we understood it likely wasn’t. Thus, we forged ahead.
It often saddens me that I cannot change their circumstances. I grapple with disappointment when I realize the doctors were right, and I am heartbroken that I cannot fix it. Yet, I remain undeterred. My motivation for having my boys wasn’t based on a belief that we could outsmart the odds or defy this condition. I became a mother to them because of my love—unconditional and unwavering, even when the journey is tough.
Currently, my one-year-old twins exemplify typical cases of Lissencephaly. They have faced early seizures, infantile spasms starting between 4-6 months, cortical vision impairment, and very low muscle tone. Their development is on par with that of a two-month-old, and they are fighting hard to reach the age of two. As I write this, my son Ethan is in the children’s hospital, battling pneumonia (and emerging victorious).
I’m putting in my own hard work, too. This journey is challenging—not just at times, but most of the time. When someone comments, “I don’t know how you manage,” I simply smile. Truthfully, I’m not sure how anyone endures this. Watching your child struggle, witnessing them lose individual battles while ultimately losing the war, and seeing the grim reality unfold before your eyes is agonizing. But I understand the reason behind it all: every kick, every smile, every good day, no matter how many bad days follow, every moment, every memory, is cherished and loved.
Because boundless love and profound hope are integral to the experience of being a devoted mother.
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Summary
The journey of parenting twin boys diagnosed with Lissencephaly is filled with challenges and heartbreak. Despite a grim prognosis, the love and hope for their future drive the mother to persevere. Each moment spent with them is treasured, reinforcing the profound bond that exists between mother and child.