parenting

  • empty hallway with locked cabinets and an emergency exit door

    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…

  • It’s a Rare Graduation!

    Look out world! These girls are comin in hot! Today my sweet ladies graduate from high school and I’m emotional, y’all. 12 hours from now this chapter will close for good. No more meet the teacher nights. No more running to this practice and that event. This brings on another set of challenges for us, like all rare parents. What happens in college? My girls went to the school nurse yesterday and picked up their rescue medications. The principal emailed me both of their 504 plans and copies of their seizure plan so I could hand them off to them for their college to keep on file. They don’t want…

  • a woman and 2 teens standing in front of a large banner outside in black shirts and leggins. the shirts match and read "Angioma Alliance"

    Diagnosis Day: Every Story Has a Beginning

    I don’t know that the English language has developed the words to describe quite how I felt the moment I heard the official diagnoses for my twins. Shock, sadness, grief, anger, resentment, panic, loss, terror. None of those seemed to really convey the gravity of my feelings. What I do know is that I was sitting at home, working at my new job, minding my own business when life as I knew it changed. Twin A was at school and called to let me know that she was waiting with a bunch of teachers and her sister for an ambulance. Twin B had a seizure and they were taking her…

  • What Good is it to be Mad at The Wind?

    People often ask me how I keep going. They ask me how I can smile and laugh. They wonder how I can possibly make plans for the future and count on better days and moments ahead in the face of so much grief. Some days it is harder than others. Some days I realize I am waiting for three calls from two different facilities for two different kids and it becomes overwhelming. The best way I can explain all of this rare disease parenting is just shy of unbearable. It really is. My life really is. On those days, I often bounce back and forth between shock, helplessness, and anger.…

  • woman in a black shirt smiling with a yellow coffe cup and a group of people behind her

    Where do I Belong?

    I often wonder where I belong in this life. What right do I have to call myself a parent of children with rare diseases or medically complex kiddos? So many parents are facing unimaginable impending grief and sadness. So many children are on breathing machines, in wheelchairs, are tube-fed, have so much equipment and so many needs that 24 nursing is required. What right do I have to complain? If you’re nodding your head in camaraderie with me now, I invite you to look at it in a different light. Would you roll your eyes at a parent of a child who suffered from ADHD or migraines to buck up?…