All the light

This picture may seem familiar to many who have been here for awhile now.  Spencer took this picture shortly after he came home from his mission.  He had this fascination with the night sky and went on many late excursions to capture the stars. 


As Sam and I walked out of the Urologist's office yesterday, I remembered this picture.  I remembered how dark the sky was the night this picture was taken.  I questioned what could possibly be seen on a such a dark night.  The image he returned with was stunning!!  Look at all that light, it wasn't dark at all.  A million stars we never knew existed because we couldn't see clearly. 

We've been caught in a loop of dead ends and less than helpful specialists.  The run around has been discouraging and even dark at times.  I felt like maybe we would never get answers until it was too late and every prayer of hope I said, seemed to be dashed with all the limitations of man... and Emergency Rooms.   

This week, my prayers shifted to, "I've done all I know how to do, please keep him safe until we find the right person to help us."   I had no idea all the blessings of safety God was giving us, until I heard the doctor tell me all the problems he sees with Sam, uncomfortable things that Sam has learned to live with for years!!  This new Urologist has been an answer to some desperate prayers.  During the more than 2 hour exam with him, the darkness I have felt, gave way to a flood of light!  All the blessings I didn't see, because I didn't know how desperately we needed them, finally shone so bright.  When it seemed like we were being left in the dark, Heavenly Father was filling our world with beautiful light, it's just so hard to see sometimes and while I do know that this is how he works...it's nice to get a glimpse of it every now and again. 

Sam's problems are not simple and they are extensive, at least this is the initial feeling.  I've known since the start of these problems, a full year ago that doctors were missing something.   The world of medicine has become so divided into specific sub specialties that you can scarcely find a doctor to view the person as a whole and consider the bigger picture.  You can't treat one thing, without affecting everything else.  My kids are constantly criticizing me for talking to our Hematologist about GI problems because to me, everything is connected and they need to know everything, even if they only treat one thing. 

Our new Urologist has that way of thinking. He is considering all of Sam's symptoms and past history.  This might be the single most reason why I love this new doctor.  He listened, he taught, he was patient, thoughtful and didn't hand us a prescription for a giant band-aid of anti inflammatory meds.  We left with a plan to move forward, not answers, but a solid plan!!  I can't ask for anything more.   He willingly admitted that he knows nothing about DC and how the underlying disease affects Sam's kidneys, bladder, and reproductive system but he said he will research and consult with a host of other doctors.  He has ordered some imaging for next week and a follow up with him after imaging is done.  He doesn't believe that the thing everyone has been focusing on is the actual problem but rather a manifestation of something else.  I love that we left there feeling hopeful, respected and empowered.  That doesn't happen very often. 

Sometimes, I think I give off the vibe that I just want a cure and doctors should play God.  I get so frustrated with them sometimes.  I don't need them to be God and I'm not looking for a cure, but if what health my kids have can be supported, then I want that to happen.  I know some things we will just have to accept and live with, especially as they deteriorate and that's just something we'll have to figure out as we go, and hopefully, we will know when it's time to rest from the battle. 

Sam has a long road ahead and he won't likely feel better for awhile.  Our doctor gave me permission not to take Sam to the ER unless 3 specific things were happening...So, hopefully we will get a break. 

Tonight, Spencer is coming home!  He is just what we need right now.  We all miss Spencer and we miss being together as a family.  I know it seems weird but there is a fresh energy when we know we all get to be together.  That might be my greatest accomplishment in life...that we can't live without each other. There is some serious depths of love here and that's just how I like it to be.  




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