I have been thinking about a writing a book. I am one of the parents that threw all of my parenting books away shortly after my child was born...she just did not fit into any of their norms...and I was tired of them making me realize it over and over again. Where is the term Biliary Atresia in the What to Expect When Expecting Book? Do they cover "how to flush a Broviac" or "All of the many glorious ways to clean up puke" or better yet "Signs that your child may be having an antiphilactic reaction"? Where exactly does it say how yellow your baby should get before you should be alarmed.
I remember the first weeks of Emma's life. One of the parents of a child from my school told me that Emma looked jaundice. "Her eyes are a little yellow". So, I took her to the pediatrician the next day and he told me "it is slight. If you notice it going to her trunk, then we need to be worried". However, when you continue to stare at the child from that moment on...looking only at her trunk....do you really notice when the yellow comes?? Aparently not because at our next Dr. apt. I thought that Emma was the same. The nurse asked me to take off her clothes and told me she would be right back to weigh her. The nurse stepped back through the door, took one look at Emma, and with a terrified look in her eye she said, "I will be right back". I did not see her again that day. Instead the Dr. came in and sent us for immediate blood draws. HMMMM???? I guess that her trunk must have lookes just a little yellow.
Where are the books that prepare you for what you WERE NOT expecting. Where are the books that are going to tell ME that everything is going to be all right? I love love love my child with all of my heart and soul! I'm just looking for some sense of security. Do all parents feel a tightening in their stomach each time that they feed their child...wondering if it will be coming back up, or will she have an allergic reaction? Do all parents work with their child on speech day in and day out hoping to one day hear the words "I love you Mom"? (not knowing if it will ever happen). Do all parents have to advocate for their child to find the absolute best fit for therapists to work with their child (therapists who truly believe in your child and are as compassionate as you are about encouraging your child to be her very best in this life). Do all parents cry themselves to sleep each night praying to a God (that does not seem to hear all of her prayers) that she cannot continue on this path much longer? As I type this and the tears begin to flow again at an unstoppable rate it makes me again ask....why??? A question that I will never have the answer to.