Reece’s counts were up for the third day in a row, so he was able to leave the room today. He signed up for playroom time, but decided he didn’t want to play. We ended up doing a couple of wagon rides and some hall-walking. His legs are getting pretty skinny, so I am pushing him on getting out of bed.
The GVHD test came back as essentially positive. I say “essentially” because they never tell you anything definitively here. So he stays on the steroids for at least 10 weeks. He is actually feeling and acting more like himself since starting the steroids. Of course, I was thinking we were getting a handle on things. My realization of my naiveté came when the endocrinology fellow came to consult with me about putting Reece on insulin injections. Yes, you read that right. Apparently, the steroids cause glucose levels to be very high and, in most kids, they need insulin to regulate it. My husband said it best, “I love how every solution causes other problems.” I was not very cordial with this woman; I wasn’t rude either, I was flat. It didn’t help that I wasn’t aware of the consultation ahead of time and that she didn’t introduce herself other than just barging into the room. She had the nerve to say to me, “You look alarmed.” Really? I was thinking I looked refreshed and calm considering the breezy nature of being with my son as he is going through BMT. She then asked all about Reece’s health history and our family’s health history. I can see the diabetes health history, but I am pretty certain she can look the rest up. For goodness sake, we have been here for nearly two months. Long story short, Reece’s blood glucose level is too high, so he will be getting insulin shots over the next 24 hours and from there they will determine how often he gets them, based on what his blood is saying. We are dreading this whole deal. It’s not the end of the world, but after everything else, it is just one more added (and highly stressful) thing to have Reece do. The good news, if you want to call it that, is that after the steroids are done, he will be able to taper off the insulin. This is such a chew-you-up-and-spit-you-out process. We could use a lot of prayer on this–no need for insulin and a way to make it less stressful for Reece if he does need it.
I was so naive when we started this process. I am glad that I was naive, too, because to say you are not naive means you have been through this before. Unfortunately, there are parents and kids up here that are not naive when they get here. And the statement, “Ignorance is bliss,” is so true. The longer we are here, the more I know and the more I know, the more stressed I become. And the more inquisitive I become. And the more feisty I become. And I am just a wee bit pregnant, so I emphasize that last part about being feisty.
The reason I bring this up is that I just did not expect all of the things to crop up like they have. I knew there could be side effects and I knew this was going to be long, but I had no idea what we were in for and that is probably a good thing. This has led me to question just about everything–from my faith, to my role in life, to how I view the world, my kids, my family, my health, and God Himself. I can not, for the life of me, figure out where God’s going with this. I was much more trusting at the beginning and much more willing to give things over to Him. Now I feel like there is a line between what I know about Him through faith and what I am experiencing about Him through life. I have never been at odds like this before and I wouldn’t go so far as to say I don’t trust Him…I just don’t “get” Him. I find Him more mysterious than ever. Oh and I really, REALLY wish there was more written on Mary–mother-of-Jesus, Mary–so I could understand how in the world she watched her son suffer. Because when I think of God and how Jesus suffered and how He had the power to do something about it and didn’t–I can not relate. I know what a gift Jesus gave us, I know we are saved only because of it, and I suspect part of the rationale for having the price being paid that way was so that we as humans can understand what a price it really was. But, as a parent, I can not relate. I need Mary’s autobiography to hear how she did it as a human. Clearly, God chose her knowing what she would have to endure. I want to know what she thought of God–if she doubted Him or was at odds with Him. I do know this; I still have faith. And I know I have faith, because I am well aware that God will do what He has set out to do, regardless of how I feel about it. I don’t believe that faith is about getting what you ask for and having your faith grow because you got what you wanted. Faith is about asking for things and knowing full-well that God could give them to you, but may not, and still believing in His love and goodness. It’s about having trust in Him, despite His answer. Still, I just don’t get it.
I used to think the toughest person I had ever met was Jim Lovell. He is the astronaut that Tom Hanks portrayed in the movie “Apollo 13”. I remember shaking his hand and thinking, “This man flew to outer space, was put in a highly life-threatening situation, and despite all odds, figured out a way to get back home.” Now, he takes second place to the toughest person I have ever met–my son.