Tuesday, April 23, 2013

A Lesson in Trusting Yourself

Liam's take-home EEG testing
I've always lived by the mantra that above all else, you should trust your gut. Then I became a mom.

Plaqued by uncertainty, I lost my ability to trust myself and my judgement. I was paralyzed by a fear of being wrong, of not knowing what was best for my child or even myself. I collected experts like some women collect shoes--each one beautiful and oh-so perfect for just the right occasion. With my arsenal of doctors, daycare workers and other moms, I would defer major decisions to my committee and then simply go along with the advice I was given by the most-experienced party.

And you know what? It totally worked. I took the saying "it takes a village" to heart and let those around me ease my parental uncertainty with their knowledge and real, on-the-job training.

Then one day, just before Liam's third birthday, we were talking and hanging out and for a split second he looked different. I blinked and it was gone. Thinking I needed sleep or another coffee, I dismissed it.... until I saw it again.

In the briefest of milli-seconds his face changed before me. And again it was over before it started; leaving myself to wonder if I was imaging things. Did his eyes really droop? Did his face fall? Did he just disappear for a moment?

My brain said: Maybe it was the light. Maybe he's tired. Maybe I'm tired. Maybe he's hungry. Maybe I'm hungry. It was probably nothing.

My gut screamed: SOMETHING ISN'T RIGHT. His eyes DID droop AND his face FELL. He DID disappear.

And who did I listen to? My head.

But I started asking all my resident experts. Has anyone noticed anything with Liam. He sometimes gets this zoned-out look, but it only lasts a moment... The no's came from all over: daycare, family, friends, even my husband. No one noticed, no one saw anything. So I stopped asking, but my gut remained on high alert, always waiting, always watching.

Again and again I saw it, only for the briefest of seconds, for months and months until finally one afternoon I was in the kitchen and I heard Jesse call out from the living room, "I just saw it." He didn't have to explain, I knew what he meant. He agreed with that it didn't look "right," but everyone we asked thought he was "deep in thought," plus I was almost 9 months pregnant, so it was easy for us to dismiss it again.

Then Connor was born and Liam was so excited that it happened in the middle of a word, he said, "hey baby Co{BEAT, BEAT, BEAT}nnor." It was like someone paused him, like he was a object, a toy, a DVD and he could be put on pause--it felt like the world stopped spinning.

I told Jesse my biggest fear--do you think he's having seizures? No, no, it's probably nothing. But that's how we ended up in the Pediatric Neurologist office with a 3-year-old toddler, 2.5 week old baby and fear rolling off our bodies. But the doctor agreed, it's probably nothing, we'll just schedule a couple tests to make sure.

Liam was sedated, he underwent an MRI, EEG and a take-home EEG, which means he wore the EEG equipment home like a funky hat--it was attached to a recording device, if we saw any activity like what we had been describing, we were to hit a button to time-stamp it.

I was devastated watching him clunk around the apartment wearing all this stuff, then trying to sleep with it on. I was filled with self-doubt and self-loathing, what kind of a mother puts her child through this? It's going to be nothing. I will have tortured my child for nothing.

The next morning was the worst, it was an extremely painful 90 minutes of Jesse and I removing the EEG from Liam's head and hair. Then Jesse drove the recorder and the gear back out to the doctor's office before work--we had already scheduled a follow up appointment to take place a few weeks later. The doctor told us that if we didn't hear from him, then there was nothing to worry about and we would discuss it at the follow up.

Two hours later my phone rang and I saw the doctor's office on the screen.... I hesitated. I almost didn't answer it. It had only been two hours since Jesse had brought in the device. My head decided it was the office calling to confirm they got the gear and to double-check our follow-up appointment time, while my gut was quietly shaking its head no... After what felt like the 30th ring, I answered. It wasn't the receptionist or nurse that I expected, it was the doctor himself.

He said, "I need you to come in today." And just like that the axis of our world shifted. I could physically see the normalcy of our life tilt under the weight of his words.

My gut was right, my head was wrong, oh so wrong. Liam was taking absence seizures as well as partial seizures. To say that I handled it with strength and grace would be an outright lie. I fell apart, I sobbed for hours and then when I was all cried out, I cried more, the tears simply would not stop. I hugged Connor, just a few weeks old and let myself completely give in to the fear and the devastation--my boy, my beautiful boy has epilepsy.

We had so many questions. Can he take a bath? Can he swim? Will he ever drive a car? And they were all answered with the skill of a veteraned doctor who told us that everything would be OK and he truly meant it.

Liam is now on a medication called Depakote. It treats both types of seizures and, get ready for the really cool part: because we caught it so early and because he is so young and his brain is developing so rapidly, he actually has the ability to "out-grow" it. The medicine "tricks" the body, eliminating the seizure triggers and allowing for the brain to develop "normally." He will be monitored closely for the next couple years but we are hopeful that he will be medication and seizure free by the age of 6. Isn't modern medicine amazing!?! 

I tell you this story, not only to share this experience with you, but to remind you of the awesome power you have: intuition. Some believe in it, others question it, but from my perspective, it is for real. I implore you to trust yourself above all else, and remember that no one knows your child better than you do. So if you ever get that niggly-little feeling, trust your Mommy-gut and don't stop until you are satisfied.

As for Liam? Well we had our neurologist check up last week and it was totally uneventful--which is my favorite kind of appointment, the kind where you can walk out and simply go on with your day!

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