On HATING Biliary Atresia

I. Hate. Liver. Disease. I. Hate. Biliary. Atresia.

I learned, via email today, that another baby has been born with Biliary Atresia. A friend of my mother's knows this mom. I hope to know her soon, too. I cried at work, knowing what this mother is going through - what this BABY is going through.

The road through Biliary Atresia, liver disease, and transplant is so, so, so lonely. To feel like you're the ONLY ONE out there experiencing this mess is awful. I remember feeling so alone.

But I also remember not wanting to talk to ANYONE who could have ANY idea what this was like. I didn't want commiseration. I wanted my misery and loneliness. It felt good there. I could be ANGRY there.

I found an online support forum shortly after we returned home from Omaha, and I remember thinking, "I wish I had known about this sooner!" So sometime between diagnosis and coming home, apparently I got over my wanting to be alone issues.

To this mother, whether you read this or not: I'm here. I understand. I care. I am simply a phone call away. If you need me or want me, I am here. You are not alone, and you don't have to be. If you want to be alone - I understand that, too. I'm not going anywhere - so when you're ready to scream about how unfair this all is, I'm here.