That I want to do many things. So I may as well make a list, because this is my blog, and I can do what I want. Anyway, here goes.
1) Sometimes, I want to go up to God and ask him why. Let me be clear, I am aware that God is not the cause of my suffering. I read a book my first year of college that attempted to tackle the difficult question of why bad things happen to good people. Some people have the mistaken impression that God says "OK I'm going to give so and so such and such disease because they've been bad" or, "I'm going to give so and so this disease because I know they can handle it". That doesn't convince me. I don't buy it. Sorry for those of you who might, but I certainly don't. But, ahem, that's an entirely different story. It's difficult for me to praise God at times, because I have at times been caught up in being angry with Him. What I've come to realize is that when I suffer, God suffers right along with me. The pain I have dealt with, the suffering I have endured, can not compare to the pain and suffering my savior endured for me. And, when I think further, I also know beyond a shadow of a doubt that even if being crucified would only save me, the crucifixion still would have happened. That's the power and the depth of God's love for us. When I think of that, I realize that God suffers with me, and if I listen closely, if I quiet myself and open my heart, I can come into a deeper relationship with Him. God will sustain me and get me through this latest decline. Of that fact, there is no doubt in my mind. It's easier said than done to accept all of this. I'm struggling with it. But, I'm still here, and as long as I am still here, even if I am only able to simply be, then I will do just that...I will "just be".
2) Crawl into a hole. OK, so I'm not going to lie, this isn't going to solve anything. But come on guys, I'm human. I look at everything sometimes (which is my first mistake, looking at everything) and just want to curl myself up into a ball after crawling into a hole where I can hibernate. It's not an option in the literal sense, but there are a fair few people who do this frequently. During difficulties, it would be easy at times to say "I refuse to do this anymore". I have to admit, I feel that way often. Over time, I have become better at adjusting my perspective and purging myself of the negative energy while sucking in the positive. Allowing negative thoughts, energy, and emotions to consume yourself makes it impossible for you to learn. In order to learn something from a difficult time, your heart has to be open to it. Really, it IS the only way.
3) Hold my Aleia. Again, I know this isn't possible anymore. It's one of those realities that is still very difficult to accept. Whenever I was down, all I'd have to do was go see Aleia. She could be a little stinker at times, and some days (especially if it had been a long time between visits), Aleia would "ignore" me for the first five to ten minutes of said visit. It was her way, I think, of "punishing" me. But it was never too long before we would begin playing, laughing, smiling and singing. Throw in some cuddle time and barney, and you can understand why I'd feel "all better" (OK, not all better but as close to it as possible..you'd be surprised how much being with someone you love makes you feel better, I'm just saying.) I'm also "just saying" that hold her would comfort me, because she always knew how to make me smile. All I'd have to do is look into those beautiful green eyes. I miss those moments more than I can possibly say.
4) Talk to Papa. Yep, you guessed it, impossible. At least, face-to-face conversation is. I'm a firm believer in the fact that loved ones' spirits linger with us in their afterlife until we join them. But anyway, I digress. Papa and I shared many things. We were each other's companion and we vented to each other constantly. This relationship is one of the best examples, at least in my life of a true give and take relationship. And when we weren't talking about things, we were watching movies. The act of watching a movie can be so simple, but yet it was an important aspect of our relationship. Simply being and enjoying time together was important. And valuable. Here's the thing, I also know Papa is always with me. He's watching over me, cheering me on, being proud of my accomplishments. Papa knows what I'm going through, he's gone through some of what I have and so much more. He can be a great example of what I should do during this "convalescence" in a matter of speaking. I put "convalescence" in quotation marks because in no way am I completely unable to care for myself, but I am unable to live life as I am used to.
So there you have it. I've been feeling sorry for myself again. Go figure. I mean really, it happens. To everyone. Some are just more open about it than others. I happen to fall under the category about people who are "open" about it. And by "open" I mean that I complain. A lot. I'm working on it, really. I've realized I have a great deal to be thankful for. Though I have Mito, I am very lucky. There are people with Mito who haven't seen their first birthday, there are people living with Mito who can not get out of bed at all. I can still walk, I can still get out of bed at times, I am able to go to school, and I can still eat. For some, that may seem very minor, but for a person with Mitochondrial disease, being able to eat is huge. Digestive dysmotility is a very common problem, and many with Mito are dependent on feeding tubes and TPN (IV nutrition) for survival. Granted, my body actively attempts to refuse solid food. But, it does not completely reject it now, so for now I will be thankful.
There is a greater purpose at work here. Of that much I am sure. God is allowing me to learn something, I just have to open my heart to what He is trying to teach. Again, it's not like He said "Sami should have Mito because she'll learn from it, I think I'll give it to her..", but He is allowing me to learn something from this. Perhaps by enduring this, I can really attempt to understand my residents in a deeper way. Most 20 year old individuals do not get a glimpse of this kind of pain and suffering. My residents live with the realities I'm living with temporarily each and every day. And what's more, they probably will do so for the duration of their lives. I have hope that I will get out of the house and work in November. I have hope that my body will get stronger and I will be back to being busy and active again. However, I realize that I will probably not go back to the person I was before this decline. The nature of Mito is to be progressive. Many people with Mito have crises and come back from them, but often times there is always something that they have lost with each decline that they can not get back again. It's part of living with Mitochondrial disease and I'm doing the best I possibly can to accept this reality. It's the reality that I must not only live with but accept. My mind needs to be at peace concerning this situation, as does my heart and my spirit, as much as is possible, anyway. It's going to take awhile, it won't happen overnight, and it's going to be a process.
I need to take this time to figure out what God is trying to teach me, what God is trying to allow me to experience. There's something more here. I just have to find out what that is.
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