If there was ever to say, “Yeah, I know,” this was the day. The day started out a little hurried as Norah decided she needed to eat every hour so that it was hard for me to get ready in the morning and get out the door. We finally made it to our usual gathering at Well Rounded Momma for the Momma’s Milk Circle, which is for breastfeeding moms to visit, hang out with other moms and babies, get support, and if needed, get help from a lactation counselor. We didn’t have much time since I had a doctor appointment that afternoon, but I at least wanted to stop by, say hello to my friends, and weigh Norah. On their scale Norah weighed about 13lb, 3oz, which was almost a pound and a half lighter than she was 1 week before (14lb, 9oz). That means the stronger lasics/diuretics we had started were working to remove fluid from her belly. Because of her skin color and her giant scar though, it’s hard for other moms to not only notice Norah, but unknowingly stare at her.

One mom in particular who has brought up concern and questions to me before sat next to me and seemed to continue where she left off last time. She asked me about Norah’s condition, about liver transplant, and then commented that even though her belly looked better than last week when she saw her, her arms and legs looked really thin, like she was malnourished. It was at that point that I decided it was time for us to leave. I felt as if she was accusing me of under-feeding her or not making sure she got enough calories or something. I tried to briefly explain that due to Biliary Atresia her body has difficulty absorbing nutrients, which makes weight gain difficult. Then came the words that absolutely put me over the edge… “Oh this must be so hard for you.” She didn’t know me, she didn’t know Norah, she knew nothing about our lives, about Biliary Atresia, about needing a new liver for Norah to survive! All of a sudden I felt a very unwelcome pity. As I quickly packed Norah up to leave, I peered at the group of women and saw many new moms of whom I had never met stare at Norah, and I immediately welled up with tears and knew that no one understood. As I drove away I realized that not only was this a place where I would continue to get looks, comments and questions about Norah, but that everywhere I went people were probably staring at us, and my heart sank.

As if that wasn’t hard enough, when I arrived to my doctor’s appointment, Norah was insistent that she needed to nurse again… While I completed my new patient paperwork, in the waiting room, without a cover. When we were finally taken into the exam room after having been there for an hour, one of the first things the nurse assistant said upon shutting the door was, “Whoa. He’s yellow!” Not only did I have to briefly educate him on biliary atresia, but after several minutes of me saying she, he still referred to Norah as a male, so I had to say, “SHE is a girl.” About a half hour later the doctor popped his head in and said that he would be a couple more minutes because he had to attend to an older lady who was sick, but before he popped back out, he took one look at Norah in her car seat and said, “I only work with adults, not babies. I’m not a pediatrician.” All I could do was reply with an unfiltered, attitude in my voice response of, “Yeah, I know.” Then when he finally came in to see me, he looked at my bloodshot eyes (I had been crying between when he had popped his head in and when he came back) and told me that my eyes were likely due to seasonal allergies. I tried to explain to him that I nurse Norah, so I still don’t get a lot of sleep, not to mention Norah’s BA causes a lot of stress and anxiety, but he didn’t have time to listen to me apparently. He continued to do a quick examination and talk at me, then handed me a lab slip and said to schedule a follow-up appointment in one week.

After I left the doctor’s office I was hurt, offended, and mad all at the same time.  All that had happened in the last few hours was too much and I broke down, crying and nursing for several hours in Norah’s nursery. That’s when it occurred to me that this was only one of the many more days like this we would have until after she gets her transplant, and it made me incredibly sad. My cute, little, smiley baby girl doesn’t deserve judging looks, comments and questions and neither do I. This hand that we have been dealt is unfair and cruel, so I just have to try my best to look for the silver lining and know that as soon as we get a new liver, life will be different. Until then, I guess I need to grow tougher skin and stand up for myself. I have always and will always continue to do everything I possibly can for Norah to be her advocate when she can’t speak for herself in hopes that she can one day lead a healthy life, and no one can take that away from me.