So we are headed to the neurologist on Monday morning. I thought I was doing great with this but in the last couple weeks I have slowly gotten more and more uptight about it. You know that feeling of nausea when you anticipate something you really don’t want to do? I’ve had it long enough that I started to wonder if I was pregnant. Anyway, I wrote this in my journal last night and my sister-in-law encouraged me to share it this morning.
“Gotta love family who asks the real questions…last night the in-laws were out and they started asking me questions about the neuro . Apparently I got uptight and tense as later they asked me how I was doing and what was going on. It is funny because all this time I thought I was excited to see the neuro, but the more I talked about it, I realize this may not be true. I want to know if Em’s head bob is purely visual or a symptom of a larger issue…don’t I? I mean that’s true, right? I know I am tired of answering that question everywhere I go: Why does her head move around like that? But I am starting to realize that I don’t think I actually want to know the truth.
With no one telling me otherwise, I have been able to convince myself that her head bobs because she can’t see very well and that is why she is uncoordinated and has a terrible sense of balance as well. I have accepted this and lived in my world of ‘everything is going to work out’. Now I am faced with actually knowing the answer to this question and I am sick to my stomach, short with my kids and pretty much up tight all the time. I wish I was just resting in God, but instead I am so scared to hear what He might tell me that I am almost cutting Him out so I don’t hear it. I mean it could be good news, right? Why can’t I just live in that hope?
This situation of living in the unknown of my child’s future and the stress that places on me is miserable. It’s not like I think about it every day or sit and mope about it. It’s just one of those things that sits in the back of my mind and pops up here and there, mostly when I don’t expect it and smacks me across the face. It sends me reeling until I figure out what just happened…and this time, it’s another specialists. I’m tired of it. I want it to be over. For months, without drs telling me what is wrong with my kid, I have lived in a state of worry-free freedom and now I see that disappearing like a vapor in front of me. I want to know, but I don’t.
I am reminded of a conversation I had with a friend this past vacation that went a little something like this: So, B, what is Em’s prognosis? Me: I don’t know. We just have to wait and see. For example, we know there is plenty of damage to her lungs but no one knows if the new lung tissue that is growing in will be healthy or not. We won’t know her lung capacity or ability until sometime between five and seven years of age when her lungs are finished developing. Friend: What’s with the head bob? Me: We don’t know. We see the neuro when I get back but it could be anything from seeing double due to her crossed eye to some sort of brain damage indicating a bigger issue. Friend: So her eyes are her big issue? Me: Well, yeah, I guess. Friend: How well is she seeing? Me: We don’t know. I know she can see that you are smiling from about 10-15ft away but she certainly doesn’t see any detail looking across the room…in fact, she doesn’t even try to look across a room. We won’t know what she is really seeing or what kind of detail until she is much older and can tell us exactly what she is seeing when we place something in front of her. Her brain is actually the huge question mark for us. 70% of these kids have learning disabilities of some sort. The odds are not in her favor, but until she starts school and tries to learn to read and write, we won’t know and until then, I can hope she is fine. Friend: Well, she looks great B. It’s hard to believe anything is wrong when you watch her walk around and play, she looks so normal – well, minus the head bob thing. Me: Yep, and since it is just a ‘wait and see’ game, we just have to keep up with life as normal and try to ignore all the thoughts and doubts surrounding her future and what capabilities she will actually have. Easy some days, harder on others.
I have to be honest, some days I look at her and I rest in the peace that God has all this under control and He is in charge and even though the circumstances may not go the way I would like, He has prepared us for it and we will have enough grace to deal with it when it comes. Other days I watch her head bob and I start to wonder how we will deal with a mentally challenged child. How will I teach her? Will I have to home school? I start to panic and soon I am worried and wishing this wasn’t my life and wanting God to just change everything for me to be the way I want it to be…and in MY timing.
For the last several days, I have to confess, I have lived in the second scenario and I am having a hard time letting things go and just trusting God. Which amazes me. I mean, I can look back, I can see God’s faithfulness and mercy through all my life and yet every time something new comes up, I struggle again. Do I still believe God has our best in mind? Do I still believe He will carry us through it? If so, then I need to let go, not worry and rest in His peace.
Yet I find that in a strange way, as time rolls on, it is both harder and easier to do this. Over the course of time, I am aware of so much more that could be out there…there is more to give to God. And yet at the same time, I have a longer history. A history I can look back at and see God’s faithfulness permeating it. He has never left me before and He won’t leave me this time. I almost have no choice because I know He will come through for me and yet every time something new comes up, it is still a very hard decision for me. I realize how weak I am, how much I need God and I hate that too, but I am even more grateful that He is still there for me. I gotta quit trying to do this on my own. I can’t control any of it, but God can. It is His and I release it to Him. Forgive me Father for waiting so long to trust you again. Take this from me and help me to grab a hold of you with all my might. Your plans are not to harm me but to give me a hope and a future. Please give me the faith to believe that and live in your grace for this moment AND the next one to come.”
I can’t tell you what a relief it is just to write that out. Sorry to those who asked how I was doing and I blamed it on my kids or fatigue from my fun, yet exhausting vacation…I didn’t actually know what was going on yet.
