Notes from a Rare Disease Mom

Thea was home sick with a fever when I first learned about Sammy’s death.   I was making pumpkin pancakes hoping that extra carbs might give Thea a boost as her body fought the latest sickness going around.   I picked up my phone when it beeped and saw a text from my sister-in-law that said “OMG Sammy!   What happened?”   I ran to check our Facebook group with a growing sense of dread.   I scanned the posts until I found the announcement that Sammy had passed away in the night.   I was in shock.   Sammy was the first tango2 child that we found in the world.   He brought so much joy and hope to our family.   How could he be gone?   In a flash, I feel small and alone.   Our children are sick and there is nothing I can do about it.   I can’t stop it from happening.    Sammy Another tango2 mom and I message back and forth throughout the morning.   Her thoughts and texts bring me some comfort.   I know she is overwhelmed with the same feelings that I am experiencing right no

When Thea first started preschool, I would walk out to the busy playground to pick her up after school.   Each time, instead of playing with the others, I would find Thea sitting alone quietly or snuggled next to a teacher.   This broke my heart a little bit each time though I understood why.   Thea had just learned to walk and when other kids bumped her, it threw her off balance and she would cry.   She couldn’t handle most of the playground equipment and she had just started speaking a few words and phrases.    Thea's First Day of School Once, during pick up, a boy from Thea’s class approached me and asked, “Is Thea is baby? She can’t talk.”   Not really knowing what to say, I responded, “No, she is the same age as you,” and walked on.     I told myself that the boy was just curious, but it still made me sad.   During mito awareness week, I gave Thea’s teachers a book that was kid friendly and explained mitochondria disease so that day they sat