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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?…
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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 14-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…
Sharing Rare Mom Truths One Post At A Time
