I feel like I had sort of a full circle spina bifida moment today. I took Lucy to the hospital to see how her infection had progressed. Finally some good news: after 26 days on IV antibiotics the PICC line can come out! As we sat in radiology waiting for the doctor to remove it, a nurse came in to check on us. She asked why Lucy had a PICC and I explained she had SB and had developed an infection on her back which required the IV. She looked sort of puzzled and said "oh well if she has SB it must be a mild case, huh?". I'm sorry, did you just say "if"? I am sure she did not mean much by her comment. She might have even meant it as a compliment. I just couldn't seem to get it out of my head though. Since our initial diagnosis almost seven months ago, my greatest wish was that our baby could just be normal. That she wouldn't have to stand out or be judged by her condition. Now in this one moment I felt like I was defending the fact that my normal baby did in fact have spina bifida.
It was a two minute conversation with someone I will never see again. I think I was more shocked by how her comment made me feel than the fact that she said it. Everyone's SB journey is different. I know that there are so many families that experience much harder times than we have. But these last three months since our little meatball was born have quite possibly been the hardest times I have ever experienced. Two surgeries, five hospital stays in the first two months followed by 26 days of IV's, and ENDLESS hours spent at doctors appointments. We still have a few major hurdles to get over but in the grand SB scheme our little LuLu is doing pretty darn good. I think back to the day of our diagnosis. The day we found out we were having a baby girl. The day we were first given the option to terminate the pregnancy. It is such a difficult time filled with so many questions and almost no answers. Once we got to meet our sweet baby girl it made everything worth it. We would go through anything for her. So although I had a negative reaction to that nurse's comment, I hope one day my daughter can just laugh it off and be able to say "yeah, I get that a lot".
