This Thursday we admit Meara to Children's once again. For some time we've suspected that she's been having seizure activity. When they first reappeared back in November we just couldn't talk about it. Now, we are starting over essentially and realizing that we aren't done learning and Meara isn't done teaching us. Thursday she has an overnight EEG and video monitoring to hopefully capture seizure activity and guide the doctors to decide what we can do from here. Meara is thriving. As usual she lives in the moment and exudes a free spirit that baffles us every day. In a world where nothing is promised it takes strong courage to stay focused on what really matters. I can say with every ounce of my being that I've been struggling to find the meaning in this journey with my beautiful, I mean extraordinarily beautiful, daughter. Although I can honestly say that I've felt defeated and that I've failed her as a Dad...I've never stopped believing in her courage and her ability to grow that enormous heart even bigger through every difficult turn in her few short four years. She's bigger than epilepsy and she's not a victim. She's a child who's soul has taught Megan and I more about living than any person or experience in our lives. There is no timeline to this journey. It's not easy but the clarity is enormous. Prayers and positive vibes are always appreciated. Nothing like brain surgery this time around. Only the realization that we start over with where to go with treatment again. Love to all.
(Photo by Laurel Riffey)