1 Week Down

Today I went to a bridal shower for my cousin. I love weddings. I love love. I always have. While at the shower this sweet little guy snuggled up on mommy and went to sleep. Gosh I have missed this all week. I will never have enough time with him. It sucks to pay other people to raise your kid. I know most people don’t look at it that way, but I do. I don’t want to sacrifice that time with him and I have to. Thursday was the best day of the week because he had a neurologist appointment and I got to pick him up at 3 pm.  Finally home to him before 6 pm. It was amazing. When I was pregnant with him he had extra fluid on his brain so the neurologist is following him. He told me I have a perfect baby and that I’m doing a great job. Exactly what I needed to hear. I found out midway through pregnancy that the baby has Beckwith Wiedemann Syndrome. It’s a overgrowth condition. (His intestines were outside of his stomach, which is what led to the testing and now he will be screened for childhood cancers frequently.) My little man has been through a lot so far which I think makes it a million times harder to leave him.  When he was born he spent 11 days in the NICU. I slept at home and then spent maybe 4-5 hours awake with the others kids at home. I was killing myself but felt horrible leaving him there alone with the nurses. I know it’s their job, but he is MY baby. MY responsibility.   These days the other kids are in school all day and they are old enough to understand. This sweet little one has no idea what’s going on and he needs me, but I can’t be there. Life definitely isn’t fair.