• Parenting Medically Complex Kids Takes a Village

    This life is NOT for the faint of heart. It is more and more heartbreaking with each new specialist, each new symptom, each new diagnosis. They say it takes a village. What if there is no village that can really lighten this load? What if no village capable of this exists on Earth? Parenting a couple of medically complex kids feel like that. Having twins in the NICU didn’t prepare me for this life. An ailing parent with multiple medical complications for whom I was the primary caregiver for several years couldn’t have prepared me for this life. The fact is that nothing can prepare anyone for this life of…

  • Ready, Set, Grow up!

    It finally happened, friends! The girls started college. They’re growing up. (I’m not crying! You’re crying!) They are still at home and going to community college while we all figure out this life. They are both working quite a bit. That means this mama is worrying quite a bit. I don’t have to tell you (or maybe I do) that sleep deprivation is a big time no-no for most epilepsy patients and I worry these girls are over doing it and not taking care of themselves as they should be. And they’re 18 so I can’t tell them anything. They may have a better understanding of the fine line between…

  • We Weren’t Meant to Live This Way

    I tell people that every single thing about every single aspect of my life changed the day my twins were diagnosed. I say that they gained a diagnosis and my soul gained somewhere in the neighborhood of 100 pounds. If I’m being honest, it’s probably more than that. I can feel the weight of that day. Every moment of every day, I can feel it. As I write this, many of my peers, my people, my village are at a conference in San Diego. They are all meeting in person, exchanging hugs and high fives. They’re celebrating small wins and commiserating in setbacks. They all understand the grief we are…

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    Brain Surgery Day: Take Two

    Pediatric brain surgery just doesn’t seem real. It doesn’t seem like it should be a real thing. Pediatric brain surgery x 2?!? Wait-what? Who even has 2 kids that need the same brain surgery inside of 3 months?! It’s just too much. Okay, not really. But it’s seriously just shy of unbearable. It’s incomprehensible to anyone who hasn’t been there. If I’m being honest, I hope you never find yourself there. Any of you. We had Twin B in Physical, Speech, and Occupational Therapy following her surgery when we finally got the approval for her identical twin to have her MRI. Everyone assured us that it was important but not…

  • Brain Surgery Day: Take One

    Pediatric brain surgery. How do you actually even comprehend that? As a parent, how do you even begin to process it? Exactly two months after Diagnosis Day, we were heading into brain surgery at Barrow Neurological Institute in Phoenix, Arizona. We went into prep 4 days before and spent the day doing scans and labs. We met with the anesthesiologist and I spoke with the nurses who would mostly be there the day of and got the lay of the land. The night before surgery I was nervous, y’all. I barely slept and I KNOW she couldn’t either. I packed and re-packed. I overpacked and overpacked some more. You would…