Dated: March 18, 2014
We had the second and third meeting today. My spiritual "high" was short lived though, folks. I had a brief moment of faith filled splendor, and now I am back to reality of visiting practical analysis land today. Our meeting today didn't go as well as one would have hoped, but it really wasn't that bad either. We found out today that his already really rare circumstance just got even rarer. So rare in fact that there is actually no statistical data as to what we can expect for him, as so few people world wide have it, no one researches it or really knows that much about how their quality of life will be. He doesn't fit into any category for the condition that he has... he has things that are congruent with both the best cases and the moderately bad cases, but where he will fall is really a great big ball of unknown. I have never talked to so many specialists, and had such little information in my life. At the end of the conversation I tried to recap the vastness of his "likely outcome..." and kind of chucked at the range that was presented..
The amazing doctor (who did our first phone call) pointed out to us yet again, that all files, even if they look straight forward, wind up with a twist somewhere along the line... We just had way more twists that were visible... and we would need to do some serious soul searching...
Soul searching is right. We are feeling a sense of openess to the vastness of the circumstance at hand, and a strong sense of fear. I cannot exactly put my finger on what the fear is stemming from. Am I afraid for David and the quality of life he may have, am I afraid in my lack of ability to provide for him and his needs, am I afraid that this just may all be too much for me...or a combination of all of the above... I also have an overwhelming sense of sadness. Again, not sure exactly why. Letting go of him, letting go of myself and pursuing him, about his medical and practical circumstance...again probably a little of everything..
We are still practically waiting for just a few questions to come back in from China, thankfully they aren't in today.. and we get some more time to wait on the Lord. In an amazing twist of fate, I have never been so happy to have to wait on a report in my whole life. I fear what decision would have been made today, if today had been go day... mostly b/c my head and heart feel all clouded with emotion, and I feel like I lost my ability to hear the Lord today. I need a settling... and we fortunately have it, without having to ask for a special extension, we just have it. Again, the Lord knows what he is doing. He knew I couldn't handle a phone call to the agency asking for more time... he just allowed the time to be here.
God is good, even in the midst of things being harder than what we "wanted" he is good. He hasn't left us alone in this whole process, and I know he won't now... I think I just need to hear the clear word again. Boy am I like an Isrealite.. I cannot even apply the lesson he just taught me. I am weak, it is amazing how weak in fact. We pray for clarity and assurance in whatever we decide. The day is coming closer where we will need to decide, and the tension we are feeling is rising as we come closer to the final decision. Neither of us tonight have an answer... and that is okay, we don't need one, I just hope one of us has it when it is time, and I kind of selfishly hope it is Jonathan.. :)
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