Friday, February 27, 2009

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.


rhonda said...

Well said, Laurie. Well said.

Anonymous said...

Hi Laurie,

I stumbled upon your blog today while looking up some stuff about biliary atresia. My twin boys, Liam and Finn, were born in 7/08. Liam ended up diagnosed with biliary atresia at 9 weeks of age and had his Kasai at 10 weeks in 9/08. I remember, on the day of his discharge, one of the medical staff mentioned that another baby was going to be transported up to CHOP from another state for his Kasai - and I remember feeling sick at the thought of another family having to go through it all. So, I know what you mean about how upsetting it is to find out it's happening to another baby.

I'm glad I found your blog!