So, this isn't a cheerful post. I decided I think people want to know what's really going on, so, here you go! People often ask how we're doing and I normally say fine, or ok, which is typically true - last week, that was not the case. For some reason it was an overwhelming week of anxiety. I'm not sure why, nothing specific had occurred. Tanner's headaches continued, his behavior seemed to be getting worse (which may have just been due to my worries), and his attention span was pretty much nil. I began worrying about what we're going to do when these things happen at school? How are we going to help him if this is due to the leukodystrophy, how are we going to deal with this as it continues to worsen?
On Monday of last week, I could barely function, I couldn't do anything without crying. I was crying for his pain, his anxiety, my frustrations, and his lack of control. I was crying for his lost future, for myself and our family. I realized at one point that my sadness for what he won't experience is MY loss. My loss of dreams and ideas I had for his future. He will never know what he's missed out on! That seemed to help a bit. The rest of the week was not so hard, but, still more difficult than usual.
I've been reading several of Corrie ten Boom's book lately. The most recent one is "Jesus is Victor." Many of the chapters discuss anxiety, worry and fear. Corrie wrote "Worrying does not empty tomorrow of its sorrow - it empties today of its strength." WOW! I love that she's not saying we won't have sorrow.
This helped me today as I started to worry again about how we're going to handle him at school when he gets upset over small things, or if his exhaustion is too much and he needs naps at school. I realized there's nothing I can do about that now, so, we'll just wait until tomorrow comes and go from there!
In another chapter Corrie said "if we do not see as much as we need or want to see, then we must tell it to the Lord. He will heal our eyes so that we see that the love of God is far greater than anything else." Amazing! I was expecting (or hoping) she would say he will heal our eyes so that we would see things more clearly, or see things in a different way but, no. She said, we will see that all we really need is the love of God! Now, I'm not trying to say that this gets rid of all the fears, anxiety, worry, etc., because if so, we'd be in Heaven :) but, it is very reassuring! I wish I could be more like her. (If you don't know her story, you should read "The Hiding Place." It tells a part of her life in which she and her family were hiding Jews and then imprisoned in concentration camps during WWII.)
So, this week is much better. I feel the Lord is providing me with peace and calm right now. I know those days of worry and fear will be back, the tears will fall, the anger will rise, the frustrations will boil over, but, I know in God's sovereignty He will help me through those times. I'm also holding onto Jude 24 "To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy."
So far, the new medication has not decreased the headaches. On Monday evening, he said he didn't have a headache, we realized it had been a great day, his emotions, behavior, etc. were much better than they had been, and were excited that finally the medicine was working. But, Tuesday morning, the headaches had returned. Just a few minutes ago, he woke up and came out to tell me "my head still hurts." That's one of the hardest things, seeing him hurting and not being able to help.
So, we're looking forward to an exciting first week of 2nd grade starting Monday. Tanner has been counting down for a couple of weeks and is thrilled to go back to school. I'm praying that it goes smoothly and is manageable for everyone (including the teachers!) So, I'll end with this picture of Tanner signing I love you when we were at Isaiah's Place a couple of weeks ago.