Living with Lissencephaly: A Journey of Love and Hope

home insemination Kit

Ultrasounds are a highlight of pregnancy. Whether you’re discovering the gender, witnessing that precious heartbeat, or checking the size and position as the due date approaches, there’s so much joy in catching a glimpse of your future.

You might think that the announcement of “twins” would be the most transformative moment during an ultrasound. In our case, that wasn’t the only life-altering news. Our lives shifted in an instant—not just because we were having twins, but due to a heart-wrenching moment that no parent wants to face. You know the one: when the ultrasound tech gets a little too quiet, the wand hovers over a spot for an uncomfortably long time, and suddenly time freezes.

The following weeks felt like a haze. Something was amiss, and that meant everything was amiss. Our boys’ brains—those tiny, precious brains—were not developing as they should. We received the diagnosis of Lissencephaly, a rare neurological disorder. The prognosis was bleak.

We were given a list of challenges to expect: low muscle tone, developmental delays, seizures, feeding issues, and worse. We were told that life expectancy could be as short as two years. Deep down, we hoped they were mistaken, but we also prepared for what was likely to come.

I often feel a sense of sadness that I can’t change this reality. It’s disheartening to think they might not be wrong. My heart aches knowing I can’t fix it. But I refuse to be shaken. I didn’t choose to have the boys because I thought I could prove the doctors wrong or because I believed we could somehow change the course of this disease. I had them simply because I love them. Unconditionally. Even when it’s tough.

So far, my twin boys, now one-year-olds, fit the textbook description of Lissencephaly. They’ve faced early seizures, started showing infantile spasms around four to six months, and struggle with severe low muscle tone. They are developing at the level of a two-month-old, and we are all working hard just to make it to that two-year mark. Right now, as I write this, my son, Ethan, is at the children’s hospital battling pneumonia—and I believe he’s winning.

I’m putting in the effort, too. This journey is incredibly challenging—not just occasionally, but most of the time. When someone offers the obligatory, “I don’t know how you do it,” I can’t help but smile because honestly, I don’t know either. How does any parent watch their child endure so much, witnessing both small victories and heartbreaking losses? How do they see the textbook prognosis unfold right before their eyes? But I do know the reason behind it all: every kick, every smile, every good day—even those that follow a string of bad ones—every moment and memory, every single part of them is loved, valued, and cherished.

Endless love and boundless hope are what it means to be a devoted mom.

If you want to explore more on this topic, check out our other blog post about the terms and conditions here. For those curious about self-insemination, you can find reliable information at Make a Mom. Also, for a great resource on pregnancy, head over to Healthline.

In summary, living with Lissencephaly is a journey filled with love, challenges, and hope. It’s about embracing every moment, no matter how difficult, and cherishing the connection we share with our children.