Updated: Dec. 3, 2019
Originally Published: Jan. 5, 2015
Ultrasounds are among the most thrilling moments during pregnancy. Whether you’re discovering the gender, witnessing that precious heartbeat, or confirming the size and position of your little one as the due date approaches, there’s an undeniable excitement in getting a sneak peek into your future.
One might assume that the moment of hearing “twins” would be the most transformative during an ultrasound. However, in our experience, that assumption is far from accurate. Our lives were irrevocably altered not just by the announcement of twins, but also by a moment that no expectant mother wishes to face. It’s that heavy silence from the ultrasound technician, a lingering gaze on a specific area, and the unnerving pause that seems to stretch on indefinitely.
The following weeks became a blur. Something was amiss, and suddenly, everything felt wrong. Their tiny, precious brains were not developing as they should. The diagnosis came: a rare neurological condition known as Lissencephaly. The prognosis was dire.
We received numerous warnings about the challenges ahead—low muscle tone, developmental delays, seizures, vision impairments, feeding difficulties, pneumonia, aspiration risks, and struggles with growth. We were told the average life expectancy was only two years. While we hoped this information was incorrect, deep down, we understood the harsh reality. And so, we pressed on.
It often pains me that I cannot change the circumstances we face. I feel disheartened that the predictions were accurate and heartbroken that I cannot mend their condition. Yet, I remain resolute. I didn’t bring these boys into the world because I believed the doctors were mistaken or that we could defy the odds. I had them because I loved them unconditionally. Even in the face of adversity, my love for them does not waver.
Currently, my twin boys, now one year old, exemplify classic cases of Lissencephaly. They experienced early seizures, infantile spasms that began around 4 to 6 months, cortical vision impairment, and extremely low muscle tone, showing development that resembles that of a 2-month-old. We are tirelessly striving to reach the age of 2. As I write this, my son Ethan is in the children’s hospital, fighting pneumonia, and I’m proud to say he’s winning.
I, too, am working hard. This journey is not easy—most of the time, it’s incredibly challenging. When I receive the obligatory “I don’t know how you do it,” I simply smile, because honestly, I don’t know either. I can’t fathom how any mother watches her child endure such trials, witnessing them lose battles that seem insurmountable. Yet I understand the “why” behind it all. Each kick, smile, and good day—however fleeting—holds immeasurable value. Every moment, every memory, and every fragment of their existence is cherished beyond measure.
This unwavering love and boundless hope are essential aspects of being a devoted mother.
For more insights on family planning and home insemination options, check out this post on home insemination kits. And for those navigating similar journeys, Emma and Lucas’s story provides valuable perspectives. Additionally, resources such as this center can help you on your path to parenthood.
Summary:
Navigating life with lissencephaly is filled with challenges and heartaches, yet the love for these children remains unwavering. This journey highlights the strength and resilience required of parents facing such circumstances. Despite the trials, every moment spent with them is treasured, embodying the profound love and hope that define parenthood.