Dated: March 11, 2014
Praise the Lord for our answer to prayer! we have received everything we requested from China about David today! (although I suppose it was yesterday as it is past midnight here...but I won't get knit-picky) It is amazing to have a full complete picture of him. It was so fun to read about his life, and really get a better picture for "who" he is. I had a beaming smile as I read all about his likes/dislikes, favorite foods/activities, what he is learning, where he excels, etc, etc. It was kind of a surreal experience given where we were just a couple days ago...
Let me back up. We did get his scans over a week ago. These I could open, and there was a report inside from the radiologist. I read the report with such vigor and excitement, until the end...when I read what I just wasn't ready to find. All the hopes for his condition to be minor and for the early detection to just be "luck," simply were not the case. The report changed the ball game. His diagnosis is much more significant than what we thought, and it is truly a "worst case scenario" on film. I was saddened, emotional, frustrated...and most of all bewildered by how on earth it could have ever have been misdiagnosed.
My brain has a problem, and it just needs to be able to "understand" and "reason" through, or I feel as though I cannot move on. I spent days, pouring over pages of information reading any and everything I could get my hands on to give us a better picture of what his life is like, how he feels, how he copes, how he "lives" with his condition. I just couldn't wrap my head around how this little boy who looks healthy and robust in his photos was basically given a "death" sentence in his radiology report. It just makes no sense...
We agreed to pray and try to just "let go" (over a week ago now.) Jonathan and I were thinking in the back of our mind we will just need to wait for the rest of his update, we aren't going to make any final determinations about him until we get all the information. But both of us were kind of thinking we would be sending his file back... So, we waited. I wondered, prayed, searched, vented, prayed some more, struggled to act normal, was blessed with a major time consuming distraction.. and prayed some more.
The downtime prior to getting this update was needed. We needed to be "ready" for what we would read today. Just yesterday as I sat in evening church, I got to listen to the pastor preach on patience and our faith. The Lord "told" many of his followers that xyz was going to happen, but then didn't bring it about right away (think Saul) All of them, were not patient. All of them saw an opportunity to bring about the Lord's promise on their own volition. All of them sinned, and lost favor with the Lord and paid enormous consequences for it, for Saul that meant the loss of his kingdom. This is what happens when we don't wait on the Lord, it is a good sobering reminder to wait upon the Lord. And the blessing of waiting on the Lord is indescribably wonderful...b/c it was his timing and not our own. Jesus did come, it required patience and sacrifice, but he did come to seek and save the Lost, and he did or will do everything that the Lord promised. In his time, not our own, so it can only be credited to him, and nothing or no one else. When we get to experience this true un-violated patience it is an amazing thing. In this case for us, we couldn't bring out David's report any quicker, we had to be patient(we fortunately didn't get a choice,) we had no opportunity to get it apart from the Lord, but it is still amazing to see his timing, and why our patience was necessary.
The time, and the patience we were blessed to receive from the Lord were necessary. The Lord gave us a chance to see David with fresh eyes today, expectant eyes, sober eyes, not scared eyes. I only had scared eyes after the radiology report. I could only see every worst case scenario and no "best" case scenario. (Here is where google hasn't been helpful... :) ) We knew he had a rare condition, and then we found out he had an even more rare and obscure condition that most children don't live long with... but here's the thing... David is living with it, he is surpassing any "normal" confine of the diagnosis! Seeing his update today it is as though the child in those scans is not the child on the paper. They cannot possibly be the same person.
So, the story isn't practically any clearer, I actually think the report has created more practical questions for us and less answers (gotta love the Lord's sense of humor)...and we are coming to the somewhat interesting intersection of resting in the fact that absolutely none of this makes any sense, and that is okay. We know the Lord always shows up when nothing makes physical sense, we have seen this, and believe it, and are resting in it.
I had a really great conversation with the nice lady, Jesse, at the agency today, as I had some questions about specialist referrals... I shared with her what was in his "scan" report and there was silence on the other end. She had viewed the scans, but not the report. There was silence on the other end for quite a bit, it was a tad awkward for me, but she seemed to have a great understanding of the magnitude of what I was telling her. She nicely reminded me that we could hand his file back at anytime, we shouldn't feel obligated to get any additional reviews, spend more money, as this was clearly more than we signed up for. I appreciated her perspective, this is how we felt just a couple days ago. We were ready to send back David's file just 3 days ago, I had even had a couple of conversations where I really had rationalized sending it back...but today came...and today...we just couldn't. This little guy is special, that much we know for sure. Anyone who can do what he is doing with the condition he has is amazing! I honestly don't know what to make of all of it, but I know we have to keep pressing on, we can't let go yet!
This is, absolutely more than what we signed up for. We know that now, without a doubt. But, onward we press. We want to have a better understanding of how much more is going to be asked of us...if we continue.
We also are firm believers in information being "hidden" for a reason. We never would have moved down to NJ if we had "known" everything we came to know during our time here. The Lord knew we needed to be blind in order to pursue what he was leading us to. We were blind with David. We requested his file with what we "knew" at the time. With what we now know...we never would have given his file the time of day. And now we wonder...what are we supposed to do with that blindness turning into sight, albeit not clear sight...as we still don't really know what a day to day would look like... I suppose we will go to the metaphorical eye doctor of both practical and spiritual wisdom.
I know I know, you are probably thinking what does the above analogy really mean...it is late, and I haven't slept much so perhaps that wasn't as great of an analogy as I had hoped. We are praying. We are praying hard for vision to see the Lord's will. We are also diligently seeking both primary and secondary opinions on his scans and life update to see what the practicals would look like for our family. We also are making these appointments with an appropriate level of skepticism that we will actually get anymore "real" insight into what his practical life will look like, as he currently is surpassing all that is "known" to be true for 70%-90% of the kiddos with his problem. It is kind of surreal... he is a little miracle, and that, in and of itself is pretty neat. He is another reminder of "BUT GOD.' Miracles do happen. I feel like we are getting to witness one with the little bit we know about his life and we are blessed through it. And that is what is keeping us going. He is a fighter, and we will continue to fight for him until we get a clear "turn back" from the Lord.
So, we need your continued prayer... The fear is still lingering and it is real. The question of is that what we are called to? is there, and real. The hesitation we have with making appointments with these specialists is there...from a time/cost/further emotional commitment/etc/etc.. (as we casually joke "it's just another $650...what else were we going to do with that money today??..." The feeling of "this is way more than we signed up for," is alive and well. And the realization of the doctors not being able to answer most of the questions we have, is sinking in. But we are pressing on, in the Lord, listening for his voice, hoping for a clear vision and praying like crazy for David, and clarity for his place in our family.
We would be blessed by your continued prayers and support as we wonder through this journey...
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