I am feeling defeated, discouraged, sad and in an odd way relieved. My doctor put it best: this will eliminate the worry that I will suddenly die from my airway, especially given how fragile it has been. I am so frustrated that my body failed me, that I underwent eight surgeries this year so far, have spent over seven weeks away from my children, all to end up with a trache anyways.
Growing up I was teased by my peers, questioned and stared at by adults and heard negative things daily. I survived, I made it through, a stronger, different person than I would have if it hadn't happened, but I made it. When my trache was removed on August 7th, 2003, I remember the overwhelming feeling that I had that life would now be easier. That now people wouldn't be so mean. While that wasn't always the case, it certainly wasn't a daily struggle like it had been. I remember thinking to myself that when the time came to start my family my children wouldn't have to experience that because of me. I was wrong. They will be forced into a world where people aren't so accepting, where things will get said and questions will be asked and now I have to prepare them for it. I feel like they are having to lose some of their innocence. I have always been medically honest with them. I will tell them the details they ask for, I will answer the hard questions and while we try to make it more understandable in terms of the vocabulary we use, we don't dumb it down for them. This will be the case when having to explain the tracheostomy to them and I can honestly say I am dreading it. I feel myself pulling in, trying to turn off emotion and have had a constant headache and burning behind my eyes as I choke back the tears. I'm not sad for me, I am sad for them.
When I got sick again at the beginning of this year, something inside of me just knew that it wasn't going to be an easy fix. For the first time that I could remember I actually felt (feel) sick. My body can't/won't do what I want it, no matter how much I push it or try to suck it up. I had a lot of time while in Cincinnati to think things over and I thought to myself what I would do if I ended up having to have a trach and what type of mom I would want to be. I told myself I would stay positive, that I would be strong and that I would take this as an opportunity to teach them how every person is different. I wanted to teach them that if someone is being bullied to be their friend and not join in on the bullying. Now that it's at the point where I have to actually go through with it I feel weak and unsure. I don't know how I'm going to stay strong and positive when I feel defeated. I can't say for certain that when the stares begin and when the questions start coming with my children with me how I will react. I know the thought of it right now breaks my heart.
I don't know how this is going to go. I know that I don't have a choice so I will make it work. I don't like it though. I don't want it. And there's nothing I can do about it. I hate feeling powerless.