I no longer know how to love gently. The only love I know is fierce. Visceral. I love fiercely, but fearfully, not fearlessly; because it’s driven by fear. Holding one another tightly… I have come so close to losing my baby girl that I have a tendency to hold too tight to those I love. My children, my family, my friends, my partner. My love is unyielding support and loyalty. It’s utter dedication and surrender. It’s all in. All consuming. Intense. We face life and death situations weekly, if not daily. And we never know when they will occur. So, I live every day acutely aware of the risk of lo ..read more

I have a friend who races motorcycles. We were talking once about crashes and he said “you have to push the bike beyond its limits to know where they are”. I was astounded and filed it for future thought. Then I thought about it a lot. That’s kind of my thing. Push the bike beyond the limits to find them? Couldn’t you just tell when you were close and stop there? Was pushing the limit worth the risk? Recently Haley aggravated an old injury during a rough patch of seizures. We visited the orthopedist who broke the news that she needed a full leg cast and crutches for 4 weeks. Haley in the cast ..read more

I’ve heard the term analysis paralysis before. A friend called me introspective as a nicer way to describe my overthinking tendencies. But I experienced a moment that really highlighted for me how powerful that inner dialogue is, and how the cycle can be interrupted with one small gesture. We walked in the woods, exhilarated by movement, fresh air, companionship, his dog happily darting around us. He led, nonchalantly hopping from rock to rock across a stream; no hesitation, no pause in his stride, his confidence in himself evident. And normally I would follow suit, sure footed and carefree ..read more

2020 was a memorable year for sure. This was the year that I lost my job but found myself. On the eve of transition from 2019 into 2020 I asserted that I didn’t need to make a resolution. I was in love with my life as it was and I was hoping for “no big changes” in the year to come. I was divorced and happier than I’d ever been, I had a job that made me feel fulfilled and finally felt like I had found the track for my professional career after so many years of mostly being a stay at home mom with a part time job. I was dating. I was exploring new hobbies and traveling. I was empowered and embo ..read more

As holidays approach and are accompanied by the pressure to make everything magical, I feel melancholy at the moments that are escaping notice in the interim as we all rush to the “next memorable experience”. Couple that with the disappointment of seizures invading after a promising start on a new medication and I find myself needing a reminder to stop, breathe and appreciate. It is ordinary moments, of wonder and innocent delight, that remind me of how extraordinary it is to appreciate the ordinary of this world. Can words actually share that visceral feeling or impart the importance of findi ..read more

We fell. Tonight. Just moments ago. After dangerous clusters of seizures. Rescue meds given and finally kicked in. She returned to sleep but I lie there feeling the defeat of yet another cycle of hope and despair. And the tears rolled down. The sobs wracked my body. I buried my face in the pillow to stifle the sound. Because when she drops I don’t know how to not fall down the rabbit hole too. I always climb out. But I’ve not yet learned how not to fall. I can feel it happen. My heart. I feel it tumble. It lifts briefly to my throat, choking me, and then it falls from my chest to a pit in my ..read more

Do you know the feeling when you’re walking through a house of mirrors and everything is distorted and seems off kilter and you feel unbalanced and unsure of where to step next? You walk with your arms out to protect yourself from bumping into anything because you can’t tell what is real and what is an illusion? So many of us are living life that same way. With a distorted image of ourselves. Unclear about our path. Arms in front, a defensive stance, poised and bracing for the next blow, avoiding pain instead of embracing it for the lessons it brings. It has taken me some time, and a whole l ..read more

A tornado of letters and words and feelings have been in my mind for months now; too chaotic to process the whirlwind of our recent experiences. Thoughts, emotions swirl like a dust storm inside of me. But that dust is settling as we return to the rhythm of our life and embracing the joy in each day. In September I sat in the office of a neurosurgeon, one I trusted and respected, the same woman that had placed Haley’s VNS implant years ago. Somehow I felt that hers were the only hands that should be trusted with what we were considering. Years ago, after several “clean” MRI’s but our epileptol ..read more

Icing her face after a seizure knocked her down. We are walking through the parking lot talking proudly about our kids. He says “little boys learn how to fall” referencing his son’s propensity to spend hours tossing and diving on the ground to catch a football. I’m so floored I almost stop walking, stutter mid stroll, at the truth of this. As I listen to him talk of his exploits as a kid and of his boys, thoughts of how epilepsy has turned me into a helicopter, overprotective, on edge, scared Mom who has taught my children neither to fall or fly, but only to assess and avoid danger, invade. &n ..read more

All my life I have defined and labeled myself first and foremost as an extension of someone else… Daughter Sister Friend Wife Mother I have never thought of me principally as “Individual”. And while all of those titles are of varying importance and comprehensively part of me, they are no longer my defining factor. I am me.  And that alone is enough. Granted, I can not (nor do I want to!) separate those parts of me. This is the first time that I am acknowledging that being an individual is just as important as being a Mom and I don’t have to sacrifice one for the other. I can do both ..read more