I handled today a lot differently than I thought I would. When I imagined every scenario in my head it wasn't really a good day any way I looked at it. As the day played out there was actually much more light than dark. While we really didn't get the response we thought we wanted we got something today that in the end we needed. My thought process surprised even me. It is a really good thing that I am not in control because God knew what I needed and knew through a lot of preparation prior to this day I would come to a realization that I needed to trust in Him, not myself or the doctors that I love at Children's Hospital.
So here it goes, I called the hospital first thing this morning. They took a message and the neurologist that had called the day before called me back fairly soon after. She waited while I had another teacher watch my students in the computer lab. I walked into the office where I could talk to her alone and listened as she began with, "How are you doing?" I am never really sure how to answer that question but I said, "Ok." and quickly asked about the results of the tests that were sent all over the country (literally). She said she was actually calling to see if I was ok with setting up an appointment with the genetics attending and his team to review the results. I told her that I was fine with that but I wanted to ask a few questions about what they found so I didn't have to wait weeks to get all of the information. She agreed that was understandable and she told me she would give me whatever information she had and answer any questions I had as best she could.
I started with the most pressing question in mind, "Will this impact Macy and Johnny or could they have the same thing?" She couldn't give me an answer but she said I should be very optimistic. At first, I was frustrated and I think I may have even asked the same question a different way two or three more times over the course of the converstation. Why wouldn't she just say no!? I wanted to hear they do not have it or they will not get it! After I had given up on getting a straight yes or no I asked if we knew exactly what happened to Charlie. She said after receiving all the results for the rare genetic mitochondrial disorders that they know of all of them were negative, meaning he did not have them. They know he has some sort of mitochondrial disorder but they are not sure what. In other words, they cannot tell us what he had. They cannot give a name or explanation to what happened to him. They likely never will.
My first thought was how in the world am I going to deal with not knowing. I even thought in my head, "God don't you think we've dealt with enough? Isn't it the least you could do to give us a few answers, some closure maybe?!" As soon as those thoughts entered my mind it was like an audible voice spoke over them and I knew exactly why it had to be this way. Now that Charlie is gone I don't get to be in control. I never was and I never will be. Now more than ever I have to trust in God. I have to trust in his grace and love. John and I have had to rely on our faith through this entire journey and this part of our story is no different. We have to know that Charlie's Father in heaven loves him more than we ever can. Macy and Johnny's Heavenly Father loves them more than we ever can. I have to trust that Charlie was one in a million, maybe even one in one hundred million. He was created in the image of God. His life is not going unnoticed. He has forever changed my life. His 250 days in my belly and 17 days on earth made a lasting impression on my heart and changed my perspective of just about everything.
Sometimes I think if I could put Macy and Johnny in a bubble my motherly instinct totally would. I would keep everything bad that I possibly could from happening to them but I can't. I can't keep bad things from happening. Regardless of our circumstances or our thoughts of protecting our little ones we live in a world where we are not promised tomorrow. However, I know with complete certainty that with Jesus we are promised forever. We are promised forever in heaven, the place Charlie gets to be right now with no pain and no suffering.
This afternoon someone I have looked up to from the day I met her, shared a song that she said made her think of me. The song is by Lady Antebellum called Hello World. She said she wanted me to listen to it when I was ready. I listened to it as soon as I got in my car. One of the verses says, "Sometimes I feel as cold as steel, and broken like I'm never going to heal, I see a light, a little grace, a little faith unfurled, hello world."
Today I saw a lot of light. I saw a lot of grace. I saw a lot of faith. It was actually a good day.