Living With Lissencephaly

Ultrasounds are one of the pregnancy highlights. Whether you are learning the gender, seeing that precious heart beat, or confirming size or position as the day draws near, there is a lot of excitement in peeking through and getting a glimpse of your future.

One would think that hearing “twins” would be the most life changing moment of an ultrasound. But in our case you would be wrong. Our lives were forever changed, not only by the word “twins”, but also by a gut binding moment that no mom wants to experience. That moment when the ultrasound tech is a bit too quiet. When the wand lingers too long on one spot, and comes back for a second look. When time stands still.

The coming weeks were a blur. Something was wrong, therefore everything was wrong. Their brains. Their tiny precious brains were not what they should be. The diagnosis was a rare neurological disorder, Lissencephaly. And the outlook was grim.

We were warned. We were told of low tone, delayed development, seizures, infantile spasms, vision issues, feeding issues, pneumonia, aspiration, and failure to thrive. We heard life expectancy was two years. We hoped it was wrong, but knew it probably wasn’t. And we moved forward.

I am often saddened that I can’t change things. Disappointed that they weren’t wrong. Heartbroken that I can’t fix it. But I am not deterred. I am not shaken. I didn’t have the boys because I thought the doctors were wrong. Because I thought we would be the first to change the face of this disease. Because I thought we could beat it in a way no others could. I had them because I loved them. No matter what. Unconditionally. Even if it’s hard.

So far, my twin one year old boys are textbook Lissencephaly cases. Early seizures, infantile spasms beginning around 4-6 months of age, cortical vision impairment, very low tone, not developing beyond that of a 2 month old, and working their tails off to survive until 2. As I type this, Landon is in the children’s hospital, working hard to beat pneumonia (and winning).

And I’m working my tail off, too. This is hard. Not just sometimes, but most of the time. And when I get that obligatory “I don’t know how you do it”, I smile. Because I don’t know either. I don’t know HOW anyone does this. How any mom watches their child endure. Watches their child lose a battle, only to lose the war. Watches the text-book come true right before their eyes. But I know WHY someone does it. Because every kick, every smile, every good day, even if followed by 100 bad ones, every moment, every memory, every single cell of their being is loved, appreciated, and treasured.

Because endless love and immeasurable hope, are both part of being a textbook mom.

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