Love God, and do what you want

Dear Tavish, when you were inside me, growing, and strong, you were loved. You still are. There are times that I look back and remember how I felt. You didn't seem real to me. I could feel you, and I could see how big you got by the size of my belly, but most of the time it still felt like a dream, completely surreal. There are times I think about the three days I held you in my arms, and it still feels like a dream, almost like it never happened. I know it did, because of the hole in my heart, but sometimes its hard to get my head to realize that. Because my head and my heart don't always coincide, I have a hard time accepting that I always did everything I could for you, that I loved you the best I could. But I'm trying to realize that. I'm trying to let go of the part of me that says I made the wrong decisions, that if I had loved you more, better, you would still be here. That its my fault you died. Growing up, I was taught to believe that if you believed something you had to live a certain way to show it. The problem was, I wound up believing that if I didn't live exactly the way I was told I should then that made me a bad believer. A fake. In the same way, I was told that in order to be a good adult, I needed to act a certain way, I had to fulfill my responsibilities. This is true, but those responsibilities did not just mean basic life requirements (going to work, cooking food, paying my bills). They meant belief requirements as well. As an adult, I do hold certain beliefs-about the way God wants me to live my life. But those beliefs are not the same for everyone. There are some things that i think are ok to do, that others do not (for example, I wear jeans and shorts, and cut my hair, but a good friend of mine wears skirts, and long sleeved shirts, and has never once cut her hair). Neither of us is wrong, it's just different. But when you are told that you must act one way in order to be a "good believer" or a "good adult," it makes decision making harder, especially when there isn't a clear cut "right way" to do things. When I found out that you had Trisomy 13, I was devastated. I had never met anyone before with this condition. I had never even heard of it. It was completely alien to me, this new territory I found myself in. When you're raised with a prescription for how to act, life is easy. When that prescription gets taken away, it's like stumbling down a mountain path in the dark. There is no light, there is no clear direction. You hit a fork, and both ways travel south, but you can't see which way is the better way to go. So you make your best choice based on what the path behind you looked like, and you keep going. I felt like I knew I had made the right decisions while you were inside of me. I researched, and I fought for you. There wasn't much to do for you physically, because my body was taking care of all of that for me. You were safe, and warm, and cared for. Your body was relying on mine, so I made sure to eat what I was supposed to eat, and to sleep as much as I needed to, and drink more water than I ever thought I could (half your body weight is a lot!). I knew at that point that I was doing all the right things, that there was nothing else I could do for you. It was in God's hands. But once you were born, all of that changed. I now had to follow through with the decisions you dad and I had made ahead of time. And in the moment, I felt like I was making the right ones. But in reality, there was no way for me to know what the outcome would be from any given decision, and looking back, I constantly wonder if I made the right ones. And here is the problem with that. I was raised believing that if you want to be a "good person," a "good believer," and for your life to "go right," you need to follow specific steps. If life doesn't work out the way you wanted it to, then its your fault. You have to go back and fix what you can, and do better in the future. But when you died, there was nothing else I could have done, at least not to my knowledge. I did all of the right things, and your life was still cut so terribly short. So what does that leave me with? That I must have screwed up somewhere. If life is supposed to work out by doing the right things, then I must have done something wrong. It must be my fault in some way. I must not have loved you enough, or cared for you enough, because that is the only explanation I have for why you did not live. It's awfully hard to reconcile what you were raised to believe about life, with how it actually turns out. When I was in college, I had a conversation with a professor of mine. We were talking about a boy I was dating, and he asked me how it was going, and somewhere along the line, the topic of kissing came up. I mentioned that I did kiss my boyfriend, but that my family didn't like it because it was "dangerous." His response was "so is hand holding." Then he told me the most profound thing I had ever heard before, "love God, and do what you want." This advice has popped up in my head a few times since then. It is certainly something I have struggled to remember over the years. The things is, God doesn't ever promise me that life will go well if I do action ABC. In fact, he specifically promises that following my beliefs will result in greater hardship. He does, however, promise eternal life in heaven after the fact. Looking at it from this perspective shows me something. There was only one right choice I could have made in all of this, and that was to give you a chance. To carry you for as long as I could, and to provide you with the best chance at the best quality of life. I did that. The rest falls under "love God, and do what you want." There is no right or wrong decision in this situation. And regardless of what I chose, I had absolutely no control over the outcome. That is scary, but it is also liberating. It tells me that I was not just a "responsible mother" who took care of you because I had to. I did not make bad decisions, and it is not my fault that you died. I love you very much, Tavish, and I can't wait until I can once again hold you in my arms. Run and play little boy, and give your grandpa a kiss for me. Love, Mom