Don't ever discount the wonder of your tears. They can be healing waters and a stream of joy. Sometimes they are the best words the heart can speak. William P. Young
So I will not try to stop them. Not yet. Not tonight.
I'm crying because I'm mad. I'm angry that so many doctors and nurses missed this. I'm infuriated that even after they realized they missed it (because our amazing surgeon didn't) they still didn't seem to listen to me. I'm pissed that I had to continue to fight for Magnolia up until the last second in the hospital. I'm furious that most of the doctors and nurses (not all the nurses - we had several who would say things like, "You are the mom and you know your daughter") considered me "That Mom!" instead of realizing I had something worthwhile to say, something they damn well better listen to because I know my daughter! I am enraged because I got a glimpse of my life this week and realized this is how it is always going to be. (However, I know how lucky we have been. We had the most amazing, unbelievable, incredible neonatologist when Magnolia was born. Oh Dr. D why can't you just follow us everywhere? We also had the best NICU nurses on the planet. I still cannot put into words what it was like to have our hero, the surgeon, be where she was when she was and literally save Magnolia's life. We also had some great nurses in the PICU this week. I now realize I need to be thankful if I have one doctor or one nurse that 'gets' Magnolia, that understands she doesn't follow their rules, that realizes when I say something is wrong they need to listen! I guess that is what I can hope for, that during future hospital stays that we find one person to work with us for Magnolia and not against us.) I'm livid that when the doctors or nurses google Wolf-Hirschhorn Syndrome the first link that pops up is one that shows a picture of a dead fetus! REALLY?!?!? Here is what they should read http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome/ .
I'm crying because I'm scared. I'm so very scared. I'm deeply, genuinely scared. I cannot imagine losing Magnolia. I realized again this week how many people's lives this tiny little girl has touched. I'm humbled by the love, prayers and support that we have been given, not just this week but since the beginning. I'm crying because I not only have the most amazing family and friends that moved in, texted, called, visited, brought food, spent the night in the hospital, tore down a fence :-), watched Toller, prayed for us, gave us money for hospital food, offered to do anything and everything for us but I'm also crying because of this bond, this indescribable feeling of support, encouragement and love from people I have never met. People I may never meet. People who walk the same walk I do everyday. Amazing people who have incredible children with WHS. I can honestly say I could not do this without all of you. Your love, support, comments and advice gives me the courage to believe in myself and my fight for Magnolia.
I'm crying because I'm tired, so profoundly tired. The kind of tired I have never felt. It's time for me to go to bed. Though I'm aware this kind of tired will not be quickly fixed with just sleep. Like sleep is even something I am capable of right now.
I cannot begin to thank everyone enough for all you have done. I will not even begin to try. I will instead offer the promise that I will do the same for you.
|I'm not going anywhere Toller|