Time For Truth

Ok. Here goes. Inspired by my dear friend Gwen and her insistence on blogging and bearing her heart. Also inspired by another dear friend Mark and his reminder of doing things for yourself too.
Today has been a bad day. Not a rough day physically, lazy in fact. But emotionally a bad day. As I begin to write this that sweet insistent voice inside my head is screaming HUSH! I am a positive person. I am ever searching for that silver lining. If it isn't there I will put it there. I have crayons. But that's what I DO. Not what I FEEL. I FEEL like screaming most days. I FEEL like crying most days. Screaming scares people and crying just ends up giving me a horrible headache so I usually don't. I float. I float somewhere between hope and despair. A phrase from a well known movie "Finding Nemo" is one I quote quite often, "Just keep swimming." That is how I would describe my life. Did I mention I'm afraid of water? So here I am, where I would never have chosen to be, trying to find a life preserver.
Guilt. There is a word that occupies my every day. I fail everyday. That's it. No way around it, I'm an imperfect being. When I fail, my child could die. That's a hard pill to swallow. Yeah, woe is me. I'm learning lessons I would have never learned. Becoming someone I would have never became. I am grateful. Most of the time. Is it horrible when I am not? Is it horrible to want a life that is "normal?" Is it horrible to have dreams where you made different choices? I guess it is if you dwell on it. It can keep you from "smelling the roses" so to speak.
So much has happened in my life these past 6 months. There have been times when I honestly wanted to stop. Where I wished for a special watch that could actually freeze time and stay that way. There were some days where I just checked out...they were to hard to bear. I had a nurse refer to me as "stoic" yeah, that's one of those check out times. They asked me when Raegan got her trach if this was something I really wanted to go through with. "She is going to die anyway, she has a terminal condition. Are you sure this is something you will want to deal with?" I wanted to scream at her, "NO!!! I DO NOT WANT TO DO THIS!" My baby was fine!! What went wrong?? Why did this have to happen?? Was it my fault?? Did she aspirate that time when she threw up? Did I allow this to happen to my sweet Raegan? Of course I wanted her to live, of course I would do whatever was necessary to make that happen. Of course I wanted her to be happy and have a good quality of life. How could I possibly make this decision? I remember sitting in a tiny parent's room on a little bed just being woken up and asked to make this decision. Hard cannot describe how this was to deal with. Yet I must, there is no time to feel, no time to discuss, do you want your daughter or not? No question, of course I do.
So that brings us to today. Why I felt so utterly horrible. It was time to Raegan's trach care. Chad was gone. Do I attempt to do it myself? Sure, why not I've done it before. That was it. I started to cry. I didn't want to see that horrible hole in my daughter's neck. I DID NOT. But, she needed it done. I didn't do it. I decided to wait for Chad to get back. That was it. I was a horrible mother. I needed to buck up but I cared more about how I felt that I cared about what Raegan needed. Bad mom. I am not amazing. I am not an angel. I have A LOT of questions for God.
I have 3 children who are going to die. That's it. I have to deal with it. We are all going to die right? I've heard that line before and I try to use it often to fight away that demon called despair but it doesn't always work. Sometimes he calls my bluff. My friend Jess called this kind of despair "anticipated grief." Okay. Great, it has a name. Now what? Be sad. Feel the feelings. Choose how to act. Move on. Nice plan. Looks good on paper but it isn't that easy. I am human after all. I constantly struggle with that "natural woman." I do not WANT to change Raegan's trach. I do not WANT to suction her out every time she coughs. I do not WANT to organize supplies every month. I do not WANT to get a blood gas for her in the middle of January. I do not WANT to struggle to sit Easton up every time I want to give him a bath. I do not WANT to hear Megan cry every time I brush her teeth. So what? There are people everywhere doing things they do not WANT to do everyday just to survive. What right do I have to complain? Because it's how I FEEL. I've decided negativity is like a poison, if I feel it I must extract it. Look at it, then let it know I have a choice.
During my times of deepest struggle, I have reached out. I don't leave the house very often but thanks to technology I have the internet...and Facebook. The world at my fingertips. I can reach out and be supported with so much love and energy. It is fantastic. People supporting people. That is my kind of world. Thanks to Carla, a wonderful woman the universe sent to me just in time for Raegan to get her trach...her son has a trach also. She has been an awesome friend and an invaluable supporter during my most difficult times. So many wonderful friends that I have been blessed with come to mind. I would count myself lucky to have but one of them.
Thank you for letting me vent. Negativity has been purged. I love the way my children laugh. Even Raegan, with her silent laughter is a wonderful sight. I am blessed. I have three of the happiest children in the world. I get to take care of them everyday. They truly are a joy. I would not be the person I am today without each one of my children. They have all put me through their own fire. I do look forward. Maybe only into tomorrow, but I do look forward.