• 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…

  • 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…

  • 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…

  • Rare Love and Marriage

    If you, too, have a rare child (or two) I don’t need to tell you that your whole life changes on your diagnosis day. Something like a rare diagnosis will have a profound effect on the trajectory of your life, and every aspect of it. As you might imagine, the stress and chaos of a diagnosis and getting a handle on a care team is enough to strain even the healthiest of marriages. There are plenty of times I would remind myself that while I may have been frustrated with my husband’s actions or responses to my frustration, he surely felt the same. We are vastly different people with different…

  • twin girls facing each other laughing outside in the desert, one in a pink shirt, one in a green shirt

    Happy Birthday to My Beautiful Girls!

    This is it. It’s the big one! My girls are officially adults! So, if anyone needs me today, I’ll be in my closet crying into a bucket of nacho cheese. These girls have been pushed to the limit. They have been through things that would break so many. And they have handled it all with such grace and resilience that I don’t even know how to express the pride I feel from being their mom. It always annoys me slightly when people say they don’t know how the girls have dealt with all this and kept it together. That’s because I know. They are eternal optimists with just a splash…

  • 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?…

  • Meet Megan

    Hi there and welcome! I’m Megan, a rare mom to twin girls with a Krit1 deletion, known as familial Cerebral Cavernous Malformations (CCM1). My girls were diagnosed at 16 years old in the fall of 2020. They both had brain surgery in the months that followed and are ready to head into young adulthood and learn to be a more active part of their medical care teams! They have a 13-year-old brother who is much bigger than them and fiercely protective over them. I have the support of my amazing husband who has become a bit of a cheerleader as we learn to navigate this world of rare disease parenting…