Today mom told Sher and Brenndan about what was going on and that I am now in palliative care, and what that all means. This becomes more real every day. I have been trying so hard to make this easier for my friends and family. I feel like I need to/want to protect them, protect them from the harshness of all of this. It is never going to be easy, but I want it to be as easy as possible because though it may make it harder for me at first, I'm the one that gets to go. I'm the one that will be in a better place, free of pain. It has been so hard. I have struggled to breathe for so long that I don't even remember what it is like to breathe easy. I have carried oxygen so long that I don't know what it is like to go without. Yet in the near future I will be free - free of the confines of this body and the limitations it presents. My pain will be ending, but theirs will just have begun.

When I think of not being here, it makes me sad. The palliative case worker that came today mentioned that I am grieving. I hadn't thought like that. I acknowledge that those around me are grieving, but you don't really consider that the person dying also must grieve. Sometimes the loss I feel hurts so much, to know that I will probably not see any of my siblings get married and have families. I will not know my nieces and nephews. I may not see Brenndan graduate from high school or college. I won't get to see what remarkable men they will grow up to be. I see them now, and I am so proud of them. I am so proud of my sister and what she has become. They are all so young, especially Brenndan. It isn't fair. He's only 15. He shouldn't have to deal with his sister dying. He is only a baby; so young. He has never really gotten to know me not being sick. For all he remembers, I was sick. I wasn't able to be there as much as I wanted when he was young. We always thought there would be more time. And now we're out of time. This just shouldn't be happening. He should not be having to face this so young. He lost Poppy and now he'll lose me. The thing that frustrates me the most is that there isn't anything I can do about it. I can't stop it from happening. I can't make it better. I can only be here now and make memories with him now. It's just so unfair. Each of them are so good. They don't deserve this. My mom, she doesn't either. She's such a good mom. She isn't perfect. She's made mistakes. But she's been there for the important things. She's done the best she could, and that was a really good job. No parent should have to bury their child. All of this just breaks my heart. So I guess the hospice worker has it right. I am grieving. I am grieving the loss of those I love and the loss they will experience. I feel anger that I can't change things, that I can't stop this from happening or stop the hurt they will feel. I can't make ti better.

Stages of Death and Dying - Not just for dying

Many people know about the stages of death and dying, the stages one must go through when they are dying. These stages were identified by Kubler-Ross and include: denial, anger, bargaining, depression, and acceptance. It is my belief that these  stages are not limited to people who are dying. They affect anyone who experiences a major life change, especially when some form of loss is present.

Getting a trach was a major life changing event. No one "wants" a trach. It is not something that is done electively. It is done when there are no other options . At the same time, there is nothing that could adequately prepare a person for life with a trach.

My life has become defined as - before the trach, and after the trach. It is definitely something that is difficult to adjust to. Doctors make it seem as if you get a trach and everything is all better. You go back to your life. But that isn't how it works. You go into surgery with one life, and you come out with another, and just as with your previous life, you must relearn everything. The hardest thing though is that you must mourn the loss of your old life. I think if you had more time to adjust to it, it might be better. But they came in one day and said they wanted me to think about having a tracheotomy, then I agreed, and I was set up for surgery the next day. From the first it was mentioned to surgery was 3 days. I didn't have time to think or process. I was told, you need this if you want to live. Okay, and then it was done.

My life now is completely different. I do miss my previous life. I mourn the loss of it. I will never carelessly take a shower, not using certain methods to be sure to not end up drowning myself. I will not be able to swim and have to be exceedingly careful around water. I will always have to be extremely vigilant about trach care, always prepared for it to get clogged or fall out, ect. Yes, I can do many of the things I did before. I have a life. I am alive. But not in the same way as before the trach. My life will never be as it was before this. And like the stages of death and dying, I have to mourn the loss of my old life and accept this new one.

This hasn't been easy, and I know that this road isn't close to being over. I know there will be many challenges ahead. There are moments when I have hope and I am okay. I also have moments in which I'm not, that I don't want this life. I want my old life back. But that isn't possible. One thing I wish is that I had had a chance to appreciate my old life and do the some things for the last time. For instance, I would love to go for a swim. You don't fully understand what you're losing when you get the trach. You can't truly comprehend the changes n your life. And you can't appreciate certain things until you no longer have them. Sometimes I am angry, angry because "Why me? Why do I have to deal with this? I don't want to have to deal with this." You have to allow yourself that anger. But in the end, it doesn't matter why. All that matters is that you do and therefore, accept it and move on.

The period after the initial trach, when I was sent home, is what I would call the great depression. It was a period in which I was crushed by what I had expected, what I had been told, and reality. This was augmented by the fact that I was to go home and the services that I needed weren't ready and the services that I needed weren't in place. Every little thing was a huge battle, and a battle that I couldn't fight alone. I couldn't advocate for myself, and I had completely lost my independence. I went into the hospital completely independent. I came out of the hospital relent on people for everything, I couldn't speak. I could only communicate through writing. I didn't have oxygen set up. I didn't have humidification. I didn't have cleaning kits. Every little thing had several hoops to jump through. I was essentially stuck in my room because that was as far as the tubing would allow, It was hell, At that point, I kind of wished I could just go quietly in the night and die peacefully. I was tired of fighting and every little thing was a fight. I wanted to be free of suffering and able to breathe easy. It was the life I had feared and why I had been so adamant about not wanting a trach, no matter what. It was not a quality of life. I wanted to live. If someone had asked me if I had done the right thing by allowing them to put in trach in, I would've said "no". I would've said that dying would be preferable and that I wanted the trach out so that I could be allowed to go peacefully.

At this point, things are better. I have some hope. I am no longer completely incapacitated. I can be independent. I can have my life back, though not in the same capacity as before. In that, I am starting to reach acceptance. I know that this is a process, one that is ever changing and never truly complete. Though my life with the trach is different and though I miss my old life, I am learning that this new life can have be good too. It is different, but it can be different and good. I can experience joy and fun. The trach was meant to give me a chance at life. It has done this. I am alive. It is up to me, however, to make the most of that life. I am the master of my destiny. Life is for the living, and I must choose to live.